Monday, October 20, 2014


This adventure began last December.  Technically, it began in April of 2006 when I was diagnosed with osteopenia.  I had my very first bone density test on the same day I had the mammography which would reveal a density that was playing hide and seek from two different radiologists.  In a way, that day was the beginning of everything.

I discussed the bone issues with my ob/gyn at the same time she was reordering new tests because the radiologist wanted to do a sonogram of one area and magnified images in another.  He needed a prescription despite the fact that his astute eyes realized there were questionable images on my mammography when compared to the films from the year before.  Since a radiologist is a medical doctor, I'm a bit confused about the need for a second prescription.  Technically, isn't this like a referral to a specialist?

Once the hand off is made, the specialist makes the calls relevant to the care they are delivering.  Not so with radiologists. They still need permission to care for you after your initial visit.  They are trained and accredited to read imaging.  If something is not right, why would they need to confer with a non-specialist about their area of expertise?  Radiologists may be the Rodney Dangerfields of the medical profession.  Only a notch above pathologists, who, when you come down to it, belong at the top of the heap.

Particularly when cancer might be suspected, these doctors are the ones that identify and provide specifics.  They are the diagnosticians.  They are seriously important players.  They are giving your clinician the information upon which your treatment will be determined.  And yet, they are seriously under appreciated or at the very least, not given a second thought by most of us.

And that osteopenia?  We were slated to have a conversation until cancer took center stage and the conversation fell by the wayside until December of 2013.  I have had three subsequent bone density tests.  Each test worse than the one prior which came as no surprise to anyone.  Femara, along with other aromitase inhibitors, wreaks havoc on the bones.  Tamoxifen, in contract, actually strengthens bones but I was more fearful of the uterine issues associated with tamoxifen so I used my chemo-induced menopause, added an oopherectomy as the check-mate and went straight on femara.

I was faithful about my daily calcium and vitamin D supplements.  I continued to do weight bearing exercise.  Bones continued to deteriorate.  I stopped taking the calcium (I still take vitamin D) when the results of bone density number 4 returned ongoing bone loss.  Four months later, when my blood was drawn, my calcium levels were basically unchanged over a seven year period.  After carefully reviewing all of my blood work, I decided that I was going to stop wasting money on the calcium pills.  I probably should have waited to discuss this with the doctor but it was a supplement, not a prescribed medication.  Give me enough time and I'll rationalize any decision I make, no matter how dumb it might be.

Prior to December of 2013, I discussed adding a drug like Boniva with my doctor.  I determined I was not adding yet another medication to my daily repertoire.  So what happened in December of 2013?  There was a study presented at the San Antonio Breast Cancer Symposium.  The study included the use of an intravenous bisphosphonate with an estrogen suppressant after the conclusion of chemotherapy in early stage breast cancer patients.  It seemed there was a benefit in the reduction of the incidence of bone metastases in those patients who were treated with zoledronic acid.  Getting all technical.....  Boniva is an oral bisphosphonate, zoledronic acid is an intravenous bisphosphonate, brand names Zomeda or Reclast.

Hmmmmm.  Maybe it would be worth treating the osteopenia with an IV infusion.  I might be giving myself an bit of an edge against bone mets.  MIGHT is the operative word in that sentence.  The women in the study were treated immediately upon completion of chemotherapy.  I was six and a half years post chemo.  Thus, I can't stress this point strongly enough.  The study results did not apply to me.  I hijacked my mom's oncology appointment in December.  Technically, she hijacked it on my behalf.  When our doctor asked her if she had any other questions, she quickly replied, "I don't, but she does."

We began discussing that study and then my ongoing bone loss.  He was ready to write a prescription for Fosamax or Boniva. I told him I wanted the infusion.  I went through my reasoning.  He agreed it would be an acceptable solution to treat the osteopenia and we both agreed there was no science to back the idea that I was doing anything to reduce risk of bone metastasis.  But still.  In my mind, strong bones, sans any nooks and crannies for a dormant cell to hide out, I was helping prevent a dormant cell from going rogue.  Again, without any basis in science, coming from someone who is constantly jumping up and down demanding to see the data, my treatment would be for my osteopenia.  PERIOD.

It was December.  I spoke to the PA who would be ordering the treatment.  I told her I discussed it the the oncologist.  She agreed it would be an appropriate course of treatment for my bone deterioration which was exacerbated by six years of femara.  My cancer treatment was causing the problem and this is backed by tons of data.  Thus, the cancer doctors should be the ones addressing the problem.  Thanks to my prior health insurer's decision to cancel our small group policy as of December 31, I was busy scrambling to find a suitable replacement policy.  Along with millions of others, getting my ongoing monthly maintenance medications refilled was a challenge.  I had little or no patience to figure out what had to be done to get an IV infusion approved.  I dropped the ball.

In May, at my regularly scheduled appointment with the PA, I brought up the infusion.  She had forgotten about anything we discussed in December.  I can't fault her for that.  She sees many patients.  And this is why being an empowered patient capable of self advocacy is of utmost importance.  I CAN fault her for failing to make ANY notes in my record regarding the fact that she was going to get an okay for the reclast infusion.

What ensued was ugly.  I thought I wrote a blog about it, but I may have just taken that to twitter.  When I brought up the zoledronic acid, we got into it.  She told me I had to fail on a bisphosphonate before they would use injections.  What I realized in the aftermath?  She was NOT listening to me.  I was sticking to the compounds rather than the brand names.  She was using the brands names.  "We can't give you Prolia."  That was followed by a bunch of other things including her rather dismissive statement, "You said he wanted to write you a prescription, no one approved anything, you are searching on the internet."

I'm pretty sure I lost my shit at that statement.  Yes, I'm searching on the internet.  I read peer reviewed journals on the internet.  I read copies of presentations by researchers on the internet.  I communicate with some of the world's most brilliant doctors on the internet.  It wasn't until she said something about denosumab that I realized she wasn't listening from the start.  Then, she suggested she would give me the name of a "lovely rheumatologist" they work with.  "Bones are their specialty."  And once again, I lost my shit.  My voice was definitely elevated.  I pointedly told her I never wanted "prolia" but simply an IV bisphosphonate.  She kept repeating the fact that she would be happy to give me the name of the rheumatologist.  I.Was.Pissed.  I ended that conversation with a sharp tongue.  "I am not going to see another doctor to repair a problem being caused by a medication YOU have prescribed.  We are done.  I will take this up directly with the oncologist."

I sent him an email, my mom saw him the following day and properly remained out of it.  "What is happening with my PA and AnneMarie?"  I had already spoken to the PA.  She called within twelve hours to tell me she put in the order for the infusion. All my mom would say to him, as far as she knew, everything was resolved.  And again, the dropped ball.  This time everything WAS documented and 5 weeks ago, I scheduled the infusion.  I had a blood draw two days prior.  I hydrated.  On September 26th, I was back in the chemo suite for the infusion.  It was a bit surreal.  I took a selfie.  The chemo suite has a wall of windows which is quite soothing.  Makes for lousy backlight.....

One hour after my arrival, I was exiting the building.  I jumped in for a google hang out from my car with Upstate AnnMarie, ran a few errands, and by 2AM, I was shivering so badly, it woke me up.  That was Day One of 3 Weeks A Fever.  A Friday infusion followed by an elevated body temperature hovering slightly above 102 degrees precisely twelve hours later.

I was already aware fever was not an uncommon side effect, but on Day Four, Tuesday morning, I put in a call to the doctor. One of the nurses got on the phone.  "Something else must be going on.  The fever would not last this long, nor would it be that high.  You should go to your PCP, you might have an infection."  The following day, I was at the local medi-center where I was checked for pneumonia, flu, strep, enterovirus and was declared healthy with the exception of some white cells found in a urinalysis.  Out of an abundance of caution, I was put on a ten day regimen of cipro, pending results of a culture.

Less than 48 hours later, I was in the hospital emergency room.  The fever would not break, still hovering in the 101 degree range.  My normal body temperature is 98.2.  At 101, the fever kept me in bed, depleted my energy, caused a complete loss of appetite.  I could not get past the guards to the triage nurse without answering one very important question.  Was I out of the country within the past month, and specifically had I been in Africa?  The ER was a zoo and it took at least three hours before I would even SEE the triage nurse.

At 6:10, I told my mom and my husband that I was leaving.  I wanted to go home and go back to bed.  This was exhausting and no one was doing anything.  I was placated.  "If someone isn't in to see you in 20 minutes, we will leave."  I glanced at the clock on the wall.  "Fine.  6:30 and we are out of here."  I suspect he went out to announce I would be leaving because there were nurses and technicians at my bedside within two minutes of that announcement.

I fought with the hospital technician who insisted it was necessary to do another chest x-ray.  I had the disk from the x-ray taken 48 hours prior which he deemed would likely "not be acceptable" to the doctor at the hospital.  My patience level was non-existent.  After a debate that lasted several questions too long, I told the technician not to ask again and to have the doctor come and discuss the need for additional radiation.  If they wanted to do any further imaging, I needed a good damn reason and it most certainly would be something more along the lines of a low dose CT scan or nothing at all.

The hospital drew several vials of blood.  In fact, in my entire life, I've never had so much blood taken in one draw.  They needed to do two sticks to make sure the blood that would be sent for culture was not contaminated in any way by the workup for which we would have quick results.  They did an EKG.  I was given IV fluids.  And no diagnosis.  "Just some wacky virus." Frankly, my biggest concern was my kidney function.  I knew it was rare, but the medication could cause issues with kidney failure.  When all the labs came back normal and the only issues were the tests that related to my thalassemia, my mind was put to rest.

Where I disagreed?  The ongoing insistence by the nurses, the medi-center and the hospital about this "wacky virus."  I don't believe in coincidences and I don't believe that 12 hours after an infusion, I somehow developed a "wacky virus" that had nothing to do with the Reclast.  I found some information in a few forums about the side effects of Reclast including a few mentions of the lingering fever.  I was emailed by an angel who described what happened to her and it was nearly identical to my experience.  Still.  I wanted evidence.  Data.  Hard-core science.

Enter, Cliff Leaf.  We had been trying to arrange a face to face meeting and when I finally felt well enough, I began to go through a bunch of unanswered email messages.  I sent Cliff a message to see when/if we might be able to set up some time for lunch or coffee.  I told him what was happening and in his reply, he attached copies of that hard core science I was seeking.  That led me to a second paper, which, thankfully, was not behind a paywall.  Turns out the Reclast causes inflammation in certain biomarkers (cell proteins) and this could cause fever spikes.

The study I found was the absolute gold standard.  Double blind, placebo controlled population matched.  In the land of research, it doesn't get much better or much more definitive.  Without going into all sorts of science that I understand after reading it but would be completely incapable of recanting, it comes down to this.  The last sentence in the study which was published online on November 30, 2010:

Based on those data, we encourage clinicians to consider the use of acetaminophen 650 mg. four times daily for 3 days for the reduction of post-dose symptoms following zoledronic acid infusions.

The data is strong.  The number of patients who used tylenol and experienced fever of 102 (so much for the initial info from the nurse about "not that high") was less than HALF of those who were treated with placebo.

Instead of 3 Weeks A Fever, this should have been 3 Days Take Tylenol.  And yes, the paper has been printed and highlighted and will be brought to the doctor so they might think about incorporating this into their standard of care, particularly with the first infusion.

One final note:  If you've tried to contact me without success, now you know why.  And it was pretty upsetting to have to pass on some of the events I'd hope to attend over these past three weeks.  I'm still weak but at least I have answers.  And I'm once again, forever indebted to Clifton Leaf for his sage wisdom and never ending well of information.  And once again, I've learned the importance of being my own very best advocate.  With a little help from lots of friends.    

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