This Whole Thing Bites!!!!

It has been a long time since I've blogged about my breast cancer journey.  I went back to work on August 31, worked from home for about 6 weeks, then began going into the office mid Oct, 2011.  Radiation was completed the 1st week of Oct and my hair is about 1.5" long now.  I get my 1st haircut in a week!  Radiation after burn was horrific and again, something the doctor was not forthright about.  I was told the main side effect would be fatigue, which I experienced none of at all.  However, the afterburn was so bad, I could barely function for a few days.  My breast was raw, oozing, peeling and SORE at the worst time when I was trying to wrap up my last double Q for agility nationals.  But more about all that later.

From FDA.com:

Drug Name(s)	HERCEPTIN (Brand Name Drug)
Active Ingredient(s)	TRASTUZUMAB
Company	GENENTECH

This drug is giving me a damned hard time!  About the end of Oct, I suddenly experienced severe pain in my left hip, butt, leg & foot.  I felt a stabbing, burning pain in my joints as well as numbness and tingling down the outside of leg that went down to my foot, wrapped around the bottom of my foot and into the inside the ball of my foot.  I thought I'd hurt myself moving heavy equipment around in my dog agility barn getting ready for a seminar I held.  I went to the orthopedic doctor, Dr. Amann, right away because I could barely walk and could not sleep.  It was funny I could still run but afterward, the pain would be even worse. 

Dr. Amann x-rayed my hips and found nothing except a slight bit of arthritis starting.  He sent me home with a prescription for Diclofenac 75 mg (which I was already taking anyway for arthritis) and RX for physical therapy.  Well, I couldn't go to PT right away.  Too much going on at work and then we went to Tucson, AZ for a couple of weeks at Thanksgiving.  I didn't get in to PT until the 2nd week in Dec.  By then the pain was excruciating to say the least.  I could barely walk, even a few feet.

I also saw an alternative practicioner named Lorrie Harper and my good ole' chiropracter, Ryan Atkinson.  Lorrie figured out my pelvis was tilted and that if I would suck in my stomach, the nerve pain would reduce or stop.  She gave me some exercises to do that emphasized stretching.  Dr. Atkinson readjusted my pelvis and OMG did that ever hurt like hell!!!  I'm still going every couple of weeks.  Each time he says it's more and more in alignment.  Nate Goff, the physical therapist had me re-x-rayed and we confirmed my right leg is 1/2" shorter than my left.  That is something I have been told before, now it's confirmed.  So I'm now wearing a bit of heel lift in my shoes, which really seems to help.  Nate also gave me tons of exercises to improve my strength, balance and flexibility.  Going to his sessions has really helped me be motivated to get into better shape.  He almost seems like more of a personal trainer and has some great knowledge.  He really complimented me on my overall leg strength for my age :-) and that was nice.  In addition I've purchased some expensive new running shoes to use for my dog agility training and competitions.  They are supposed to be the A #1 best for people with pain and who need some sort of orthotics.  Can't wait 'til they arrive - they're called GoLite Women's Lime Lights.   

Despite all those actions....the pain, tingling and numbness are all still there.  It's more bearable, but it does not feel like things have healed at all.  I bought a book showing a woman's internal anatomy to see if I could improve on the exercises I'm doing.  I was reading that book at my infusion this week.  Nurse Rochelle saw it and reminded me that Herceptin does a number on your body, perhaps much more so than patients are lead to believe when undergoing treatment.  She said they have looked up Herceptin effects and confirmed it can create more problems for some people than thought.  I was merely told by Dr. Gray it could possibly result in headaches.  I have been complaining about muscle aches all along and told it is just part of the treatment and will get better.  What really concerns me is that I wasn't told what can happen to a person's muscles, tendons nerves and joints.  Are they more prone to injury?  Should I not have been moving heavy equipment at all?  Should I not have been training my dog and competing?  Should I not have been doing certain exercises?  Well, here is what the FDA website says about Herceptin in relation to my issues:

From Prescribing Information:  The most common adverse reactions in patients receiving Herceptin in the adjuvant . . . 

Exposure to Herceptin across three randomized, open-label studies reflect exposure to Herceptin in 1678 patients; the median treatment duration was 51 weeks and median number of infusions was 18. Among the 3386 patients enrolled in Study 3, the median age was 49 years (range: 21 to 80 years), 83% of patients were Caucasian, and 13% were Asian with the following results:

Musculoskeletal & Connective Tissue Disorders

Arthralgia 137 (8%)

Back Pain 91 (5%)

Myalgia 63 (4%)

Bone Pain 49 (3%)

Muscle Spasm 46 (3%)

Nervous System Disorders

Headache 162 (10%)

Paraesthesia 29 (2%)

Paraesthesia is a sensation of tingling, pricking, or numbness of the skin with no apparent physical cause, more generally known as the feeling of pins and needles.  Well duh, I have lots of those symptoms!  So although the percentage of people experiencing the symptoms I have is not great, they are still symptoms people have experienced while using Herceptin none the less.   I see Dr. Gray again in a couple of weeks and he is going to get an earful about this.  Here I have been wondering whether I had a severe injury, not to mention the loss of time, expense and heartache I've endured trying to fix something that may not be fixable at all.

I should be done with Herceptin in another 4 months.  The FDa website also said I should be getting echocardiograms every 3 months while on treatment so I'm one behind.  I'll let Dr. Gray know about that too.  I'm praying the symptoms of this drug will disappear as quickly as the ones from chemo did and that it ends up working to get rid of the Her-2 overexpression (another to ask Dr. Gray about, how we'll know this worked).  THIS WHOLE THING BITES!!!!!!! 

 
  

        breast cancer setting are fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, dyspnea [shortness of breath], rash, neutropenia [low white blood cells], anemia, and myalgia [muscle pain].