Saturday, December 28, 2013


I've been on Herceptin for four years, almost to the day. Long ago, I wrote a post about a side effect of Herceptin that I called the Herceptin Drip.  The Drip, to this day, remains.

Oh, so annoyingly, I might add.  I even sleep with a tissue wedged in my hand and that, my friends, is no lie.

A constellation of things just happened that freaked me out a bit.  First, at my last appointment, when talking to my oncologist, I casually and unconsciously wiped my nose, and he asked me about it. "Do you have a cold?" How long has that been going on?"

I looked at him, slightly stunned.  "Um, it's from the Herceptin, I thought."  I mean, I have had a tissue in my hand and wiped my nose for every single one of what is probably going on 75 appointments now; this was the first time he'd noticed?

Now, I'll sidetrack a bit to tell you that doctors don't infuse subtle meaning into every word they say to you. I have heard people, women especially (okay, almost exclusively women), go back and reprise their conversations with their caregivers and analyze every phrase and even facial expressions looking for subtext. However, there are rarely insinuations in your doctor's conversations with you - after all, they are trained to speak plainly.  Not to mention that many are male (to continue the sexist line of thought) and couldn't come up with hidden meanings if they tried.   When your Kindly Doc asks you if you got a pneumonia shot, for example, he does not necessarily think you are at risk for pneumonia; he did not hear rattling in your lungs that foretells this illness, and isn't worried about a strain going around that may attack your personal self.

What he's really doing is checking off a box in his computer system, one that blinks red if he hasn't marked whether you got the shot or not.  If he keeps seeing you without asking that question and checking the box yes or no, pretty soon bells and whistles go off, the monitor starts to strobe and smoke starts to pour from the computer   If he ignores all that, his license is automatically revoked and he may end up your plumber.  These doctors all are now forced to use "EMR" systems (electronic medical record) and apparently, the insurance company has questions that the doctor must answer, usually regarding preventative medicine. Your doctor, or at least my doctor, doesn't care whether I got my pneumonia shot, he just wants to check the box and save his license.  And, this system is why my doctor may never have noticed my dripping nose before - I was there when they installed the system and there is no place to put a monitor in the small exam room except the counter, which means he often has his back to me.

To backtrack even more, I have a problem with this EMR.  When I go see my primary care doctor, which I still do on a yearly basis (because my philosophy is you can never have too many doctor appointments), their EMR system keeps insisting, against all logic, that I'm overdue for a mammogram and colonoscopy.  Neither of those screening tests are necessary for me since they have found a sufficient lifetime amount of cancer, not to mention I have been in cancer treatment for four years, so what would they do? We also must remember that every 3 months I have either a CT, a PET or an MRI scan looking for more cancer (or, hopefully, less).

The doctor agrees that it is ridiculous and he said he could probably somehow get them to lay off about the mammogram, considering I don't even have all the parts necessary for their test.  But, as a testament to the power of the EMR - he wasn't so sure about getting rid of the colonoscopy screen.  Apparently, the computer is too linear to understand that if you find metastatic cancer from one spot, it counts towards all spots, and it also doesn't understand that all these scans I have are going to find what they are looking for anyway.  A PET scan is just a different checkbox to a computer.  You can't change a whole computer system for one person.   So, when we mutually agreed that this was insanely ridiculous I didn't need a colonoscopy, but he needed a way to get around the strobes, he sheepishly handed me a big card for a stool sample, which is what they give to people who, I suppose, refuse a colonoscopy for creep-out reasons rather than already-having-cancer reasons.

Not that there isn't any creep-out factor with that card.

I kindly meant to comply with his request because I neither want his computer to explode or him to lose his license -  I don't want any insurance company bearing down on the poor guy.  Unfortunately, and I'll be as un-TMI-like as I can - four years of chemo with a c-diff colitis chaser make that request not as easy to deal with as you might think.  Every day is a surprise and this test requires a bit of planning, and I'll leave that sentence where it stands.

So, way back to my nose: when my oncologist asked me why my nose was running,  it flashed that maybe a constant runny nose is not a side effect of Herceptin and I've been wrong all these years.  After all, he sees patients on Herceptin daily - don't they have tissues too?   Of course I read it was a side effect; I did my proper research.  Doctors cannot know all the minor side effects of every drug they prescribe, but hundreds of women on herceptin have reported this phenomenon.  I thought it was a side effect, but it had been years since I'd paid attention to this subject, maybe I'd been mistaken.  I seem to remember those 3 months after the end of my treatment for Stage II and before the diagnosis of Stage IV, when I had my apron strings cut and was off all medications that my nose stopped dripping - but maybe not?

Those were fleeting thoughts because, as the kids would say, whatevs.  It doesn't really matter.  The doctor was probably asking a courtesy question or was worried about catching something himself, or maybe there is a new EMR question about nasal secretions, I don't know, but it is not something I am going to worry about because, honestly?  I have enough on my list.   It is annoying to have your nose flood and see liquid plop every time you look down, but really, the biggest problem that stems from a constant runny nose is I sometimes do my laundry having missed a balled up tissue in the pocket of my jeans.

Man that Kleenex lint is hard to get rid of.

I was happily scrapbooking when heard a radio show in which the hosts were talking about a woman whose nose started running every time she bent over.  My soul sister!  She even said, "I was walking around my house with paper towels shoved up my nose and changing it every 10 minutes."   I hate to admit this but I do that as well;  there is no way I can clean the house without dripping vats of fluid onto whatever I have been supposedly wiping.  Like I said long ago, this fluid is not like mucus, it's just like water. Paper towels are pretty harsh though, and if I didn't have a teenager who would be merciless, I might even have taken a menstrual pad and created some sort of under-nose mask for times when I need to bend over and mop something, or the few days when I cook (because, um, yes and ick!)  I'd considered tampons, but the idea of not breathing sort of bugs me, as you can well imagine.

Anyway, this poor sister woman went to the doctor, who no doubt ran through his EMR questions about her PAP smears and mammograms,  and then decided she had nothing serious to worry about.  It was only allergies (in Arizona?)  he thought, so she left.

Not being able to write it off to Herceptin though, she pursued a diagnosis, only to discover that her dripping was caused by spinal fluid, leaking from a hole in her head and out her nose.


Here is the article talking about her, and in another aside, there is a spectacular example of bad writing in that piece, where the author says, "The nurse was shocked when she saw the volume of fluid left on the floor when Aragon gave her urine sample. And when the doctor asked her if she could leave a small amount of fluid for testing, she replied, "I can fill that tube up 20 times over." 

I assume that she had no kidney/bladder problems and they were still talking about cerebrospinal fluid, which makes me wonder what position Aragon sits in when giving urine samples, but yet again - I digress.   Professional writers - please proofread! (I am not professional so I can get away with bad segues.)

Anyway, the woman had graft surgery to cover up the holes in her head and all is well.  No more leakage.

Naturally, that story got me thinking - what if, after all these years of believing I had the Herceptin Drip, there really is no such thing and I actually had a big crack in my sinuses?  It's not impossible to believe since I a) have a deviated septum and b) am an Afrin addict (see a).

This brings up a host of other problems though.  Do I endure another scan to find this mysterious crack? If so, would I be able to withstand surgery to cure it?  Wouldn't it be more fun to tell people that I have brains leaking from my nose next time I'm asked if I have a cold?  On the other hand, would my brain discharge attract zombies if the apocalypse happens?

I had already called my primary care doctor to get a flu and pneumonia shot so everybody has the right checkmarks, which will happen Monday.  Maybe I'll also ask him to check and see if my sinus cavity is opening into my brain.  Why should my oncologist have all the fun?

Nobody who knows me would be surprised to discover I have cracks in my head that were leaking discharge out my nose.  They would only be surprised it hadn't leaked out of my mouth first.

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  1. Every year around my birthday, this perky woman calls me to tell me that I've overdue for my mammogram and how important it is that I come in. Every year I explain that there's nothing to put into the mammogram machine because I've had a bilateral mastectomy. She doesn't remember she's already called until she hears my snotty sigh. You'd think she would have made a notation or something so she doesn't have to make a wasted phone call. EMR probably doesn't have that check box!

    Tampax up the nose for the Herceptin drip - done it. Works nicely. However, I don't have a teenage son.

    1. I get letters too but just throw them away. I did get a phone call reminder from my doctor's office too, and while I don't remember what I said, they have never called again!

  2. Ha ha Kleenex lint! I do that all the time. The only thing worse in the washer is a disposable diaper! I did that a few times when my sons were babies.

  3. I thought my drippy nose was from the Taxol, only it didn't stop after chemo did. Of course it is the Herceptin which I'm still on. I might try that tampon trick. What else can I use them for anyway? And what did I do before reading your post? Blew my nose again.

  4. I'm sort of fixated on the brain leakage/zombie apocalypse angle. I mean with everything else you have to worry about and all...

  5. As a med student reading this puts perspective on how much work we have to do to better the health system, especially the annoying administration part. I admire your brevity, you are truly an inspiration. Wish you all the best! :)

  6. Ann, you are right. It's the boxes on the computer. My cancer center recently went to a new system and I can tell my oncologist hates it. Different questions and he considers them less thorough.

    I got handed the same kit when I refused a colonoscopy, too. My reasoning was the same, why go through it when you get regular PET and other scans?
    They have not brought up the pneumonia shot (maybe there was no box). But, last 2 years, due to chemo and radiation (twice), oncologists vetoed getting a flu shot. This year, my PCP said no. Something about my immunity levels.

    I had the runny nose thing last part of chemo, but afterwards thankfully it went away. Can't imagine how aggravating it must be year after year. Although fermara gives me a daily problem on the other end every single morning. Or maybe it's one of the things I take for all the other side effects? Who knows and since it is all necessary, does it matter? :(

    By the way, you can have allergies in Arizona. Dust, sage, ragweed, non-native plants...allergists can make a good living here.

    Elizabeth J.

  7. Trying to remember to come back here every day and vote for you for Healthline! Keep chugging along, thanks for sharing with us. I check on you a couple of times a week and think of you often. My heart is cheering you on to graduation this year, and beyond!

  8. What an excellent story! Very inspirational… Check out these other helpful sites I’ve found:,


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