Fitness and Cancer

By David Haas (Introductory Guest Blog Appearance)


It stands to reason that someone who has been recently diagnosed any kind of cancer including common cancers such as breast cancer and skin cancer and even rare cancers like mesothelioma wouldn't want to spend a lot of time exercising. The shock of having been diagnosed with an often fatal disease combined with the sickness, pain and fatigue associated with said disease can all but destroy any motivation that one would have for remaining or becoming physically fit. Physical fitness is important for everybody, even those who are suffering from cancer. Recent studies have found that while a regular exercise regimen is by no means a miracle mesothelioma treatment or a cure for any other kind of cancer, it has helped aid the recovery and improved the prognosis of many cancer patients.

Two of the most common and debilitating side effects of most traditional cancer treatments are fatigue and loss of muscle strength. Cancer treatments such as chemotherapy tend to make patients feel very fatigued, so naturally they do not want to spend a lot of time doing much of anything, let alone engage in any kind of exercise. The muscle weakness commonly experienced by cancer patients naturally results from this fatigue. As they are deprived of exercise, these patients also miss out on some of the benefits that come from being physically fit including improved sleep patterns, increased energy, decreased depression and a generally improved sense of wellbeing. In other words, exercise can help a cancer patient or cancer survivor get his or her life back.

One form of exercise that many experts suggest for cancer patients is lightweight training. It's already been established that many cancer treatments cause a weakness in the muscles, so a weight-training program has proven to be very beneficial for many patients undergoing chemotherapy or similar treatments. It is not recommended that anyone who is experiencing fatigue or muscle weakness attempt any rigorous weight training exercises, but there are plenty of light exercises that can be done that will still help to build lean muscle mass and improve the overall fitness of cancer survivors.

The American Cancer Society has become so convinced by the benefits of exercise for cancer patients that they have implemented moderate exercise programs for patients who have been newly diagnosed with cancer. These exercise programs can technically be considered palliative therapy, which means that while they will not cure or treat the cancer directly they will at least improve the symptoms of the disease or treatment.

The Sucknazone

That's what I'm calling Prednisone for now.  I keep forgetting that steroids are the gift that keeps giving.  It's maddening how this one drug plays a crucial role in the healing process, as well as the inhibiting process.  While it's staving off my GVHD, it's destroying a variety of other things.  I was informed about a week ago that I'll be needing cataract surgery on my left eye, with my right eye soon to follow.  My vision has been incredibly hazy lately and even blurry on some days.  The details with that are still being worked out. 


My blood pressure has been really high lately too, which my doctors have also attributed to the steroid dose.  Based on what those readings were in the last week, I suspect I'll be on blood pressure medication soon.


My oncologist at the University of Chicago has decided to add another immune suppressant drug to the already extensive regimen.  I'm going back on Prograf in the next week, in addition to Sacrolimus.  Prograf we suspected, was largely responsible for my neuropathy problems in 2009 and part of 2010.  But we're hoping that won't be the case this time around.  If it prevents me from drawing or playing guitar again, that might be bad.  So, by this time next week, I'll be on 3 different immune suppressants:  Prednisone, Prograf and Sacrolimus.  Now, where did I put that hand sanitizer?  


As of right now, there's not really an end in sight to stopping the steroids.  But I'll keep hoping.  I am getting tired of hearing the response 'It's from the steroids.'  Ugh.  These drugs are just reeking havoc on my system.  First, my eyesight went, and keeps changing.  Then I developed Osteoporosis.  My cholesterol is whacked and now I've got high blood pressure.  Awesome.  I'm actually in better spirits than I'm appearing...really.  They should just list the side effects that come with steroids as 'Please see your nearest Encyclopedia...then pitch a tent.'  Or, see the Jedi Archives and then go into cryo-sleep.  Seriously.  Why is the grass green?  Steroids.  Where did that lightning come from?  Steroids.  I'm telling you...this is what killed the dinosaurs.    


Stay out of the Sucknazone.  Trust me.           

Stoney Vaccinations

You just never know sometimes what your doctors have in store for you when you go to their office for an appointment.  The nurse comes out of the armory, calls your name, battle ax in hand...sound familiar?  No, not really.  I always get a kick out of my conversations with these people.  


Nurse:  "Jonathon?"
Me:  "Yep."


I stand up and follow her back to the armory.  Her ax still has blood on it, I swear.  She was fighting dragons today.  With Matthew McConaughey.  London is gone right now.  I can see the flames from my chopper.   

Me:  "How are you today?"
Nurse:  "Oh, better than you!"  (Not a good sign when they say that, I've discovered.  Never.)


Me:  "Uh-oh...why's that?"
Nurse:  "Cause you're about to get 5 shots."  


Oh goody.  Bring on the pokage.  5 shots.  Measles, Mumps, Polio, something, and something.  My mind trailed off after Polio.  I was focused on the fact that my arms would soon like a buckshot target.  


By the time I get home from there, I'm actually a little stoned.  I think the drugs were taking effect, but thankfully not whilst I was driving.  I do remember texting my wife something about 'being a pepper too.'  Who knows.  I can't be held responsible for what may or may not have occurred while I was under the influence of too many vaccinations.  My phone will remember.  Someday, I just might have to put something together that encompasses everything I've said unaware while undergoing treatment with these drugs.    
Drugs are devilry I tell you.  Just devilry.  But they make for great entertainment.

Thank You Steroids and Have a Nice Day...

The ramifications from being treated after having cancer just keep getting more complicated.  This week, a number of things happened, leading up to more drug changes.  For those who don't know or are just tuning in, I'm still battling issues with GVHD.  (Graft vs Host Disease.)  My skin is still very tight, and discolored.  The muscles throughout my body still lack normal flexibility, and my breathing is far from normal.  All these symptoms are being kept at bay by the use of Prednisone.  (Steroid.)  Prolonged use of this drug has proven the reason why long term use is bad.  In addition to finding out I have a cataract on one of my eyes, I found out this week that I have Osteoporosis, as a result of long term use of the steroid.  I'll get back to that in a minute.  

I met with my Oncologist in Chicago this past week and as a group, we decided that Gleevec might have been helping a little with my GVHD symptoms,  but it's definitely not helping enough.  We decided to stop the Gleevec and try a new drug called Sirolimus.  Apparently it's a pill similar to Prograf, in that it's a immune suppressive drug that may help 'calm down' my problems with GVHD.  Trying out Sirolimus is for right now, a better solution for the short term to see if it makes a big enough difference in the next few months.  If this doesn't work, or help enough, we'll most likely have to resort to a program called ECP.  I am to remain on the steroid dose for now.

ECP is a treatment of the blood where they basically draw a certain amount of blood, filter out the bad cells in it and then transfuse the blood back into my body.  This process would have to be done in Chicago, 2-3 times per week at 6 hours per session.  To put it lightly, I'm not interested in doing in that, and will consider it a last resort.  Especially, since I haven't heard of anyone who has had success with doing that.

I'll be starting a new drug soon for the Osteoporosis, and I'll find out what that drug is today with my local doctor.  The goal with that is to prevent it from getting worse than it already is.  

I'm frustrated with all this.  And I'll tell you why.  It just seems like we're throwing ideas around in a hat, tossing them up in the air and picking out one that looks good.  This is not the Goblet of Fire.  The very drugs I keep using for treatment, are the same ones that are making matters worse.  I guess I'm having trouble seeing the 'greater good' through all this.  I can honestly say I've never heard of anyone dying from GVHD.  It's just a big annoyance.  I have to believe that things will normalize in time.  The goal is get off all the drugs, not add more that are just going to cause more problems.  But I'm going to do what I'll always do and listen to my doctors, even when I don't like it.  

More coming soon.  

Gleevec is Helping

Little victories are triumphant victories for cancer patients.  War-like victories.  When you've looked the evilest devil in the eye and you walk away still standing saying, next, it's going to bring anyone joy.   


You know you're getting better when your doctor comes into the room and the first thing he starts talking about is college basketball, and how that relates to me because of where I work.  I'm not a basketball fan as a general rule, but when the focus of my health is now in the backdrop of our business together, that rocks.  I'm still the subject of his primary focus of course, but it makes me feel good when he sort of means, we have some issues to go over, but let's talk about this first, as in, how 'bout them Irish.  I like that.  Even if I'm not that interested.  It means things are good.  Hell, things are goodfull.  Is that a word?  I'll make it one.  I'm contacting dictionary.com right now.


Since the start of my use of the drug Gleevec, we've come to the conclusion that it is in fact helping with my GVHD.  My skin is loosening, I'm a little more flexible, my eyes have brightened, and my skin is not nearly as dry.  It's been 2 months since I started it and it's been a very slow progression, but the evidence is there, without any hampering side-effects.  In addition, we have hopes that I can start tapering off from the steroid this Summer.  We don't want to be too presumptuous on that yet, but it's a possibility.  


All is right in Jonathon's world today.   

Virtual Meetings

In the last few years, I've met some pretty amazing people, just from having a few blogs and being a part of the fast-growing social monster known as Facebook. I like to write. A lot. It's even got me in trouble a few times. So, when I got sick, writing was one of the few things I could still do. I could hide behind my laptop screen, write what I wanted, with the intention of maybe helping someone else in the same situation. It was a way for me to present my experiences from a patient's point of view, rather than what people would search for on WebMD, Google, or what ever outlet they chose. It was also a broader way to inform friends and family about day to day progressions. Or setbacks even. It was a common ground. A social, virtual water cooler.

So, who have I met? People from all over the world and in our country. Some of whom, I have not yet met in person, but are planning to in one way or another. I've met some great people more locally too, like Damon and his family in Chicago. They came to see me several times, in the hospital and here. And we've been with them through a few football games. I talked with someone recently from New Jersey through email just the other day. I met Bob at Holy Cross College while in the thick of treatment. There's also fellow blogger Daniel and his family, who live in Romania. Great people. I've also talked with Alison and Kathleen who are both from South Africa. And I'm not even listing them all! It's amazing what hiding behind your computer sometimes will do for your virtual interactions when you're faced with a common enemy. What do they say, the enemy of my enemy is my friend?

With that said, I couldn't have predicted who I would wind up meeting and what I would end up learning as a result of this blog and Facebook. Still mystifies me sometimes. In a good way.

Gleevec Part II

I win.

As it turns out, the medical team at the University of Chicago was able to appeal my insurance's original decision to deny coverage for Gleevec. Scroll down to see the backstory in my original post about this. After convincing them that this could possibly have some success in treating GVHD, they decided to give us the go-ahead, which is great news because this drug is very expensive and not even available at certain pharmacies. It has to be mail ordered, which I'm not thrilled about...but we'll give it a fair shake. Something about being able to talk to a pharmacist when you want to know more about side effects seems a lot more personal than a getting a bag full of drugs in a mailbox. You need SS numbers, addresses, ID numbers, and the names of your first born children to hand over before anyone will prescribe you any drug....but we're okay with it sitting in a mailbox for hours till I get it? Mm-k. And they say I'm goofy.

In any case, Gleevec has been approved, and we're waiting for it to arrive. All is right in our world today, thanks to the efforts of UCH. Great job to Dr. Artz, Linda and Lisa! You guys rock.

My wife is still doing the Snoopy Happy Dance.

Gleevec

In the last year, researchers and trial participants of treatment for Leukemia have discovered something that might help in battling GVHD over time. (Graft vs Host Disease). In the event of a person having a bone marrow transplant, like myself, their new stem cells can often times wage war against what's left of your old immune system, causing all sorts of problems. To this day, it's why I remain on Prednisone (steroid) to suppress those problems. (i.e., skin tightness, energy levels, flexibility, eye problems, etc).

During treatment for Leukemia, a person having the Philadelphia chromosome would have a drug called Gleevec added to their regimen. I did not have the chromosome, so I was never prescribed the drug. But in their research, trials have found that in addition to helping treat Leukemia, the drug also helps combat GVHD. As a result, my doctors want me try it and see how things go. In the last few weeks, also under the direction of my doctors, I have stopped taking Prograf. (Another immune suppressing drug.)

The downside is that the drug is incredibly expensive. (Around $4000USD for a 3 month supply). We're battling it out with our insurance now to get it approved, but so far it hasn't been a fruitful effort. They don't want to cover it because I don't have the chromosome and it's not considered a standard treatment for GVHD.

More to come as we find out more.