An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters

FDA warns about increased risk of cancer relapse with long-term use of azithromycin (Zithromax, Zmax) antibiotic after donor stem cell transplant

The French study which the FDA based a recent safety announcement on had to be discontinued after two years because the rate of the return of cancer and even death was too high in those patients with cancers of the blood or lymph nodes who undergo a donor stem cell transplant and were taking the antibiotic azithromycin (Zithromax, Zmax) long term to prevent a certain inflammatory lung condition [LUNG GVHD/BOS].

While this FDA Safety Announcement focuses on those taking azithromycin long term as a measure to prevent Lung GVHD/BOS, if you’re like me and you have been taking it long term to treat Lung GVHD/BOS, you also might want to discuss this announcement with your oncologist and consider whether or not the risks exceed the benefits.

After discussion with my oncologist I have decided to discontinue taking the antibiotic after having taken it now for over eight years. I will undergo a PFT in a couple of months to see if there has been any further degradation to my lungs as a result of discontinuing the drug.

You can read the full FDA announcement here and you can read the announcement from the drug manufacturer here.

Best of luck to you all.

#vote

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Slowing Down the Synapses

Or, Speeding Up the Reviews

Not the primary reason but one of the reasons I decided back in April to take a hiatus from the web was because I wanted to give my brain a break from all the nonsensical chatter that was cluttering it so.

I have been having what I collectively call chemo brain issues for quite some time so I thought it may do me some good to lay off for a while all the hyper-clicking and attention-span deflating skim-reading that the web so sweetly and successfully induces us into doing and which studies have told us is altering our brain and its ability to focus on and process information.

To counter what seemed to me to be my lack of focus and ability to process effectively process information (perhaps less a result from all my web time and more a result from all the chemo and prednisone I used to be strung out on years ago (and, in the case of chemo, which I still take daily dose addiction of)), I decided to turned off the web for a while.

Which, for the most part, I did surprisingly enough.

To fill the time I no longer spent on the web, much of which had been dedicated to this blog, I mobilized the pen and cracked open the books pretty hard.

Continue reading “Slowing Down the Synapses”

Any Wim Hof fans out there?

If you’ve never heard of Hof before… prepare to have your mind blown.

This dude, known as The Iceman, can withstand the coldest colds and endure the hottest hots for practically as long as he wants all because he can control his mind and, through that, his core temperature, all through a radical breathing technique of his.

I’ve lost nearly half of my lung capacity due to a side effect called graft versus host disease after from my bone marrow transplant so, apart from the fact my survival rate chances were in the cellar, I never expected to be able to do much in the way of cardiovascular work ever again.

My son turned me onto Hof last year and, while I’m still in my initial stages of learning from this guy, you should see me going for it on the exercise bike and with the weights. I cannot imagine how much more I will be able to progress the more I progress with Hof’s techniques.

Reminder, as per clearly stated in my Terms & Disclaimers I am not a doctor so don’t go doing this stuff without consulting the experts first.

But if you want to experience a new reality of living… watch the fascinating Vice documentary about him below and then go check out this wild man’s youtube site.
 

 

Get Mellow


 
If I had been given a 14% chance of living to five years after my Lung GVHD diagnosis instead of a 13% chance, I would have then had to call my little self-help book HOW NOT TO DIE: In 14 Easy Steps instead of 13.

And as the additional step to keep one alive, I would have added “Get Mellow,” because I have learned throughout my years that life is stressful — it is even more so when your health fails you. One has to take action to keep it cool or the stress just compounds the damage.

In addition to prayer and meditation, I listened to many different varieties of relaxing music to get and stay mellow. However, once I found this Tibetan Bells video it became The One and Only.

It’s been a while since I’ve listened to it.

But, seeing how the stress levels seem to be rising…

It’s time for me to once again… Get Mellow.

OMMMMM

 

The Purpose of Pain

Kurt receiving acupuncture treatment for his many ailments

When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.

We accidentally rest our hand on a hot stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.

We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.

Continue reading “The Purpose of Pain”

COPING with #CANCER?

coping-quote

Hey! How about that?!

Our good friends over at COPING With Cancer magazine featured an excerpt from my little book HOW NOT TO DIE: In 13 Easy Steps in their recent edition.

Pretty cool, no?

Yes, indeed.

You can learn more about the magazine and all the good folks there doing God’s work here.

You can learn more about my book here.

You can check out the post the book was inspired by here.

And you can learn how I feel about pink as the color of cancer here.

#cancerisjustastateofmind
#peace

 
 

BELIEVE IN LEAVE

So, I was thinking (yes, I understand the risks)…

But, I was thinking, just imagine if each of the 25,109 and growing followers of this humble site were to donate just $1.00 to help me fund my film LEAVE…

Just imagine how much that would be!

Keep in mind that I am a product of the United States public school system, and that, by design, my higher level degrees have absolutely nothing to do with math, so my calculations may be a bit suspect…

But I believe that if every one of the 25,109 followers were to donate $1.00 to help me fund my film, that would come to the heavenly financial figure of… [finger cipher]…

$25,109.00!

Now that there would be a whole lotta of cheeze and it would help me in a whole lotta ways in realizing my cinematic dream called LEAVE.

Now, I’m a practical man (not!), and I know all 25,109 of you donating $1.00 each to support my dream is an impossible expectation…

But, let’s consider what you get here for free 24-hours a day, 7-days a week, 365-days a year non-stop and in perpetuity for as long as our pretty yet petulant planet revolves around the sun that may help motivate you towards donating that $1.00…

You get to publish your work to the RELATING TO HUMANS feature…

You get the IABS&R…

You get occasional “PRO-TIPS”…

You get LITERARY ZEN…

You get ARTWORK?…

You get HUMOR…

You get HEALTH advice…

You get MOTIVATIONAL ADVICE…

And you get so much more.

But, even with all this free stuff created just for you forever floating around here, I understand that my hope of everyone donating even just $1.00 is an impossible expectation.

But then again…

SO WAS THE CAVS COMING BACK FROM BEING DOWN 3-1 IN THE FINALS!

AND SO IS THE TRIBE WINNING THE WORLD SERIES!

BUT IT’S THE YEAR OF “BELIEVELAND” BABY!

THIS YEAR, ANYTHING IS POSSIBLE!

WHICH MEANS, WITH YOUR HELP

LEAVE IS POSSIBLE!

Uhm…

Too much, right?

Yeah.

Sorry ’bout that…

Anyway…

Please donate what you can, if you can, my friends >> BELIEVE IN LEAVE.

Thank you.
 

BELIEVE IN LEAVE

 
 

More Brain Drain Stuff

Meningitis Brain
Image courtesy of National Institute on Aging

 
So… based on your very kind, honest, and funny feedback to my last post, it appears that Cards Against Humanity, while being fun and completely aligned with my temperament, may not be the game best suited for building up my brain muscle.

I know there are several companies out there now that say they have games and apps that will improve one’s cognitive function and may hold diseases like Alzheimer’s at bay. However, those companies were pretty much debunked by a group of neuroscientists with this.

The good news is that there may actually be one game out there that does improve brain function.

From the LA Times:

If you’re intent on keeping dementia at bay, new research suggests you’ll need more than crossword puzzles, aerobic exercise and an active social life. In a study released Sunday, researchers found that older adults who did exercises to shore up the speed at which they processed visual information could cut by nearly half their likelihood of cognitive decline or dementia over a 10-year period…

The data that the LA Times is reporting from was presented at the Alzheimer’s Assn.’s International Conference.

The study the data was drawn from was conducted by the National Institutes of Health’s National Institute on Aging.

The game used in the study found to be effective is called Double Decision.

Of course you have to become a paid subscriber to play the game. If you pay monthly, it costs $14.00. If you pay annually, it costs $8.00.

A monthly membership to Golds Gym costs around $25.00 a month.

I am not yet sure if I am going to subscribe to play the game but I am sure, based upon your feedback and my research, that muscles, brains or otherwise, are expensive to build and maintain.

 
 

My Chemo Brain Counter-Offensive

So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.

I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.

With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.

And I found this:

Cards Against Humanity
 
As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.

Does that make me so horrible?

That was rhetorical.

Anyway…

Which brings me to the point of this pointy post…

Research, with you being my source information.

Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?

And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.

Necessarily…

I will, however, admire your courage for admitting it.


If you’re not familiar with the game, you can learn more about it here.