Doctor yourself - the follow-up

I now have my oncologist's personal phone number.
My MUGA scan is set for Monday.
Office procedures are going to be reevaluated.
My switch to a new oncologist is on hold for one week to see if things improve.
My wig pre-authorization is finally in progress. (It took a month)
And, I have a note authorizing me to continue my medical leave.

It took the help of my insurance company to resolve it. I contacted them, and a very helpful lady named Susan tried to get through with me on a conference call. She waited on hold for nearly an hour and told me that it was completely unacceptable. I agree.

This led to my doctor calling me back and giving me his cell number, and an apology for overlooking the test, which he agreed I should have had.

I told him that things happen, and I can understand the oversight but not being able to reach anybody in the office to be able to correct it was the biggest problem. Again, he agreed and mentioned that it was an ongoing problem that cropped up now and then. I warned him that I'm not a needy patient but I'm not calling the office again, especially if this is a common problem, so he may be hearing from me about something stupid - like a wig pre-auth. He agreed to that too.

The moral of the story: Don't be afraid to speak up! And, call your insurance company if you have any problems - they are more helpful then you might think.

Doctor yourself

I can't emphasize enough how important it is to be informed and involved in your healthcare. Unfortunately, in this day and age, that means you have to understand that you cannot completely trust that your doctor will do the right thing.

Maybe you have a wonderful doctor, who cares about you and who wants the best for you and will do everything perfectly. Maybe you have a caring doctor, but one who is overwhelmed with a caseload he has to take on to make his practice work and who overlooks things. Maybe you have a doctor who long ago lost interest in his job and like many people, is just doing the bare minimum to satisfy the job requirements while waiting for his next vacation. Maybe you have somebody incompetent. The fact is, you really can't know these things in the few minutes you'll be seeing your doctors. All you can do is know what is supposed to happen in the course of your treatment and if it doesn't happen, find out why.

It is long, long past the time when anybody should put blind faith into any medical professional, or treat their every word with reverence. Unless you find Marcus Welby practicing medicine - my best advice to you is to assume you are on your own and question, question, question.

Like I said before nobody is going to care about your treatment more than you are.

That leads me to my own situation.

I've read lots of studies on HER2+ breast cancer and the use of herceptin. Because this is a newer treatment, most of the studies on herceptin were in conjuction with an anthracycline chemotherapy drug called Adriamycin. Adriamycin causes cardiotoxity (heart problems). Herceptin causes cardiotoxity. In combination, a good percentage of people on this therapy got heart disease. Now, in most instances the heart problems were reversed after treatment, but the recommendation is to give heart scans before starting AC + H chemo.

The latest and greatest in chemo for HER2+ is TCH, which is what I'm getting. Taxotere, Carboplatin, and Herceptin. Taxotere is the substitute for Adriamycin and doesn't have the same cardiotoxic effect.

So, although I know a heart scan is routinely done for people using herceptin, I thought it was only for people still getting the AC/H regimen.

I was angered to discover yesterday, that this isn't the case. Right on the Herceptin packaging label, it says that everybody starting herceptin, whether with andriamycin or with taxotere and carboplatin should get a baseline heart function test:

Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling cardiac failure, cardiomyopathy, and cardiac death.Herceptin can also cause asymptomatic decline in left ventricular ejection fraction (LVEF).
There is a 4−6 fold increase in the incidence of symptomatic myocardial dysfunction among patients receiving Herceptin as a single agent or in combination therapy compared with those not receiving Herceptin. The highest absolute incidence occurs when Herceptin is administered with an anthracycline.

Conduct thorough cardiac assessment, including history, physical examination, and determination of LVEF by echocardiogram or MUGA scan. The following schedule is recommended:
Baseline LVEF measurement immediately prior to initiation of Herceptin
LVEF measurements every 3 months during and upon completion of Herceptin
Repeat LVEF measurement at 4 week intervals if Herceptin is withheld for significant left ventricular cardiac dysfunction [see Dosage and Administration (2.2)]
LVEF measurements every 6 months for at least 2 years following completion of Herceptin as a component of adjuvant therapy.

I asked around on the cancer forums, and every single HER2+ person taking herceptin with any kind of chemo had gotten either an echocardiogram, or a MUGA (radioactive) heart scan.

I didn't get one.

With all my research, I didn't read something as simple as the prescribing label.

So, today I called my oncologist to find out why no test had been ordered for me. As is normal for them, I waited on hold for 20 minutes, which is my limit. I hung up and called back immediately and refused to be put on hold again. I explained my situation to the nurse, and they are going to ask the doctor and call me back.

I have no doubt that if I hadn't come across the packaging label, I wouldn't get a heart test at all.

Maybe my doctor has new research that says having a heart scan while on herceptin is no longer necessary. Maybe Genentech just hasn't gotten around to changing their prescribing label. Maybe he's cutting edge, in his short-sleeved shirts and ties with old Fords on them.

Or, maybe my doctor is incompetent, busy, uncaring, or all three. Yours might be too.

Don't trust that they aren't.

Here's the deal for me. I can understand an error like this. In my life, I've made errors too. I've forgotten things that are important.

What I can't understand is why I've called their office three times, been on hold for 20 minutes each, and twice have not had a return call.

Mistakes happen and I can forgive that. I can't forgive people who don't return my calls, doctors or no. I can't forgive people who obfuscate or lie. So, I am seriously considering finding another oncologist.

It depends on what is said when I get a call back.

Here is some advice to those newly diagnosed. Find a cancer forum and participate. Search for blogs like mine. Find out what other people are getting in the course of their treatment. Do the research but also read the prescribing information! Pay attention. We are not doctors and have not been trained to understand these things. But we aren't stupid either. And, when it comes to cancer and oncology, the treatments are pretty much rote, at least in the early stages. So, find out what your peers are getting and expect that for yourself, and if it doesn't happen, find out why.

I'll let you know.



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Sore head

http://www.flickr.com/photos/fifikins/ / CC BY 2.0

You know how when you are a little girl, your mother is brushing your hair to get the tangles out? She gets frustrated and pulls too hard and screams at you to SIT STILL, and keeps smacking the brush into your head to get it over with. And, after your tears dry, you are left with a sore head.

Or, remember when when you were a teenage girl and you put your silky hair into a high ponytail. You are just the cutest thing, walking around with that swinging, shining piece of hair behind your head. You feel so sassy. But, after 12 hours of back and forth swaying, you have to peel the elastic out, pulling chunks of hair with it, and when you brush it out, your scalp is tender from all the pulling.

Maybe you were 20 and saw the latest style: tiny waves all over your hair. The fashion magazines say it's easy to get at home! Just wet your hair and braid it in small, very tight braids and sleep that way overnight. You spend hours taking 1/2 inch sections of hair and braiding them together. The next day, you brush out your braids, carefully from the bottom. Disappointingly, your hair is more frizzy and tangled then wavy - and the pulling from sleeping on the tight braids left a painful scalp. You have to scratch your head all over to make it feel better.

Maybe you are old enough to remember the Toni home perms. Maybe you tried it. Maybe you burned your scalp a little.

Tender scalp - we women have all felt it at one point or another.

That's what mine feels like now, five days after chemo. It's a sign that my hair will go. Supposedly hair goes between 10 and 20 days after your first treatment.

The way it feels, I'm betting on 10.

Haven't lost a one yet though.




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Chemo Side Effects - Taste Changes

So, it is my third day after chemo. Stomach problems have been mild and cleared up with the meds and healthy eating. Yesterday, I did get a headache, but I always get a headache. An imitrex pill and a nap helped. I felt a bit underwater and out of it. It's kind of like having a hangover without drinking any alcohol, or having the flu without being infected. I'm fine today - I'm a bit achy but nothing really important.

So far, the weirdest side effect has been the taste changes. Some might remember that I had my lingual nerve damaged in a dental treatment. It has not healed yet (maybe not ever at this point) and my taste sensation has been down by about 90% ever since. I have a strip on the left side of my tongue that still works but that's all.

So, I figured that whatever weird taste changes everybody else on my chemo regimen described wouldn't happen to me.

Since I couldn't taste anyway, you know?

Well, I was wrong. This taste distortion apparently goes directly from food molecules to brain neurons, bypassing those pesky tastebuds. Of which I don't have.

Everybody describes the taste as metallic. That doesn't begin to go far enough.

It tastes like you are a dumb little kid in the frozen north, standing by the side of the road, who was dared by mean kids to put your tongue on a frozen metal light pole that had recently been scorched by fire after a nasty traffic accident. You put your tongue on the dirty black of the pole and it freezes there. The kids laugh and run off, and you are stuck there, tasting the cold metal, the dirty, blackened soot from the remnants of the fire. You gather your courage and rip your tongue off that pole, and the bleeding starts and you pass out. You wake up, dried iron-blood, soot, and metal taste in your mouth, just as tender-hearted homeless guy comes by. He feels sorry for you and offers you a drink, but he's drunk so he hands you the wrong bottle and it's warm, pissy, backwashed beer. You take a sip and gag, and he realizes his mistake and gives you a bottle of water instead. This is slimy water that he's taken from a creek somewhere, and after you take a mossy sip, you see tadpole droppings and green slime in the bottle.

Your mouth on chemo tastes like metal, dried iron blood, soot, pissy-spit beer, slimy, mossy water with bum-backwash and tadpole shit in it.

And that's with lingual nerve damage.

I feel so sorry for you who get the full effect.



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My First Chemo Session

At 2:15, I walked into the oncologist's office and was taken back to the infusion room. It looked like a large storage room, filled with a bunch of old gray lazy-boy reclining chairs up against the walls all covered with a mixture of old, donated blankets that I don't want to think about too long. There were a couple of grey wigs stuck in a corner that I presumed were loaners as well - and those I really don't want to dwell upon. There were poles for IVs near each chair, with a big open yellow waste bucket between them.

Here is what was in the bucket:



Looks like Vincent was the patient right before me.

I was one of the first to arrive for that session and was waved over to chose my chair. Because I was sporting a cold, I decided to take the furthest one away - the last thing I want to do is make anybody sick. From my vantage point, I had a full view of the room, and was surprised to see, as it filled up with those of us who got The Cancer, that I was, by far, the youngest person there. By at least 20 years.

It's been a long, long time since I was the kid in the room.

My nurse came to start my IV and she was not happy to discover that I was to have a 90 minute herceptin loading dose. Oh, she was nice enough about it, but I could see that she was mentally rearranging her schedule. The long loading dose meant I'd be doing herceptin until 4:00, and still had the pre-meds and the carboplatin and taxotere to go. Most people have told me that it takes five or six hours for your first chemo infusion so I was surprised that they had scheduled me for a 2 1/2 hour session. Now I know why: mistake.

Herceptin went in and I sat there, playing with my iPhone, chatting with my husband who had come to keep me company. No side effects from it, not even the herceptin headache that I feared.

I spent some time watching the other patients. Most of them were querulous and complaining old people, asking for lots of special favors and needing pillows propped and wanting medication samples and detailing every ache and pain. The nurses were pretty patient with all the whining - I wasn't. I had to put my headphones in to drown it out.

Nurse: another job I'm not cut out for.

One woman, who seemed to me to be pretty clearly dying, had come from over 100 miles away, just for saline. Her son had driven her, and she had to come back for chemo the next day. I wondered why she had to go so far. Seems very sad that a woman who probably had just weeks left to live had to drive 100 miles each way to get her treatment,especially since there happen to be hospitals where she lives. But, how many cancer patients do I know - maybe she wasn't dying? She complained a lot too: how long the infusion was taking, how long the drive had been, how it was taking too long to get treated - which only made me want to never take off my headphones. I'm an evil person for being annoyed by a probably dying woman's complaints. I smiled at her a lot to make up for it.

At at little after 4:00, the herceptin was done. I got up to hit the restroom, dragging my rolling pole with me. All the elderly in the room smiled up at me like I was a curly-haired and precocious 3 year old in ruffled panties and a sun dress. Honestly, this chemo thing is good for the ego.

Time for the pre-meds; the steroid that is going to give me the energy to clean my house and an anti-nausea med called Aloxi, and then the chemo. As the nurse hung the bags on my pole, the 90 year old man next to me started making jokes about how I was getting more than anybody else and should share. I was joking back - until his wife of 69 years told me he couldn't hear me. So, I just smiled at him from then on.



Taxotere went in first. I got a metallic taste in my mouth but no other side effects. I sucked on mints to help with the taste and read a funny book a friend had sent, which was very helpful in taking my mind off this weird situation I found myself in.

At about 5:30, it was time for the Carboplatin. Obviously, the nurse was going to have to do her overtime, but I'm very thankful that she was not complaining about it. I had fears that she would open that drip up all the way to get home on time, but she remained professional. And, good thing, as I did have hot flashes with the carboplatin, and the drip had to remain low most of the time. At 6:45, I was the last person there.



The janitor had showed up, most of the nurses had left. My nurse and one other were working on a new computer program, and each time I looked up at my drip, it still seemed to still be halfway through.

My husband and I agreed that next time she checked on me we were going to ask for it to be opened a bit wider. Hot flashes be damned - it was time to get out of there and eat!

We did, she did, I ignored the heat and we were done by 7:30.

The worst part of the whole thing was when she ripped the bandage holding my IV in and ripped off the hair on my arm. I joked at at least I wouldn't have hair next time, and she seriously said, "Oh no, not everybody loses their arm hair, it seems to be the last to go."

What?! Are you telling me I'm going to lose my head hair, my nose hair, my eyebrows and lashes - and still have monkey arm hair?

How cruel is this disease, anyway?

Life is seriously not fair.


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Why I need chemo

People have asked, why, if I'm node-negative, I need chemo. The answer lies in the size of my tumor along with my HER2+ status.

According to various studies done, the risk of recurrence is quite high for HER2+, even when node negative and even with tumors smaller than 1 cm. (My largest invasive one was 3.4 cm and I also had other smaller invasive tumors).

One looked at 5-year recurrence for women diagnosed between 1990 and 2002 with HER2+ tumors. They found that 30% had recurrences, and this was for tumors between 0.5 and 1 cm. It is commonly thought that the larger the tumor, the more likely the recurrence - estimates for me range from 40 to 50% chance of it coming back with no further treatment.

Plus, 15% of the women studied had recurrences with metastatic disease - meaning stage IV. Frightening stuff

After chemo and herceptin, only 7% had recurrences. Most of the recurrences happened between 1 year and 3 years after treatment.

So, you can see, that as much as I don't want to do this chemotherapy thing, I really have to if I believe in science and statistics, which I do

Herceptin is very new. There is conflicting information regarding whether dropping off herceptin after your year is up means it will eventually lose its efficacy. Recommendations are one year - there are people doing it for two now. Stage IV gals get it weekly forever and it seems to be prolonging their survival.

Time will tell but I'll be paying attention.

Anyway, that is why I have to do chemo.

Off I go.



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PreChemo

I was super-excited about today - the day before my chemotherapy starts - because I get to take a steroid. Actually, two: one in the morning and one later in the day. This steroid helps prevent fluid build-up around the heart and lungs and can also help prevent nausea in chemo patients.

Why was I excited about it, you might be wondering? Well, I hear that this medication can give you energy. People have reported cleaning their houses all day, not being able to sleep at night and still having energy left to do more the next day.

I want some of that.

Naturally, I put off all my household chores for the past couple of weeks, waiting for today. You would too, I know. Why not wait until you know you'll be working like a maniac anyway. No point in using steroid-induced energy cleaning when it's not even dirty, is my way of thinking.

So, when I woke up this morning with a serious sore throat, I was sorely disappointed. No steroid? No clean house?

No chemo?

As much as I don't want to do this chemo thing, I am mentally ready. I don't want to be put off another week. I can't get it over with until I start.

I called the oncologist to find out if I can keep my appointment. I believe that I probably just have the beginnings of a cold and it shouldn't make much difference, but I figured I'd better be safe - for both me and the other patients I may come into contact with.

Whew! The nurse said as long as I didn't run a fever I should be okay. Call them in the morning if anything worsens but so far, we are good to go.

So, I popped my steroid.

As I waited for it to take effect, I sat at the kitchen table and surfed the web, did some online shopping and bargain-hunting, forum posting, game playing. Every once in a while I'd check the clock, waiting for that energy surge that meant my house would soon be sparkling.

Three hours later, I'm still sitting.

Wouldn't you know, the one side effect I really, really want, I don't get.

I bought six wigs already.

Maybe that means I won't lose my hair.



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