Friday, June 18, 2010

"I want a new drug"

Remember the old Huey Lewis song?

I want a new drug
One that won't make me sick
One that won't make me crash my car
Or make me feel three feet thick

I want a new drug
One that won't hurt my head
One that won't make my mouth too dry
Or make my eyes too red

One that won't make me nervous
Wondering what to do
One that makes me feel like i feel when i'm with you
When i'm alone with you

I want a new drug
One that won't spill
One that don't cost too much
Or come in a pill

I want a new drug
One that won't go away
One that won't keep me up all night
One that won't make me sleep all day

One that won't make me nervous
Wondering what to do
One that makes me feel like i feel when i'm with you
When i'm alone with you
I'm alone with you baby

I want a new drug
One that does what it should
One that won't make me feel too bad
One that won't make me feel too good

I want a new drug
One with no doubt
One that won't make me talk too much
Or make my face break out

yeah

Yeah, indeed.

I had my herceptin/oncology appointment Wednesday, and I spent the bulk of it complaining about tamoxifen.

I really want a new drug. The bone pain, the nearly continuous hot flashes and the lack of sleep from tamoxifen is doing me in. And, I told him. Intensively, and apparently, sorrowfully.

Since complaining isn't my normal style, and my funny bone seems to be dysfunctional too, the doctor said to me, "You seem depressed."

That startled me out of my whining. I ache, I am tired, I'm sick of cancer treatment and am ready to feel better - but depression isn't part of my world.

I opened my eyes wide. "No, no, I'm not depressed. I'm disappointed and frustrated because of a bad experience."

Let me backtrack and discuss my oncologist with you. I had a problem with his office at the start (and posted about it here.) I almost switched, imagining dire side effects from chemo and not being able to call to get help. But, my doctor called me personally and resolved that problem, and in fact, has turned out to be one of the most caring doctors I've ever had.

I worry about naming names in this blog, but when somebody is outstanding I don't see any harm, so if you get Dr. Blair as your oncologist, consider yourself lucky.

When he asked me why I was disappointed and frustrated, I got the impression he really wanted to know. So, I told him about my situation with my plastic surgeon; how I'd been dumped like a 40 year old wife - for somebody younger with fake, not reconstructed, boobs. I also described the whole hospital fiasco.

I told him who my new plastic surgeon was going to be but that I was still hoping to find somebody who could see me faster. He made me feel better immediately; he told me that I would likely get a great result from her, that she was very skilled and had a great reputation and I should stick with her. He almost said I was better off with her than Dr. S, but of course, that was only in my fevered imagination based on revenge fantasies - no doctor would ever say that about a colleague. He did talk up Combat Doctor though, and I believe his respect for her is real.

Combat Doctor does have a good reputation with both the medical community and patients (several people have mentioned her to me) so I am now satisfied in her as my doctor, and accepting of the fact that I am going to have to wait for surgery.

Since I'd mentioned the expander hurt, and that was part of the reason I was so upset, he did an exam. He checked out my expander and the skin and said the wound had healed very well, but added, "It seems ready to blow."

I had to laugh because that is exactly the way it feels.

We discussed the results of my DEXA scan, which showed that I have moderate Osteopenia. I'm very slight (okay, super skinny) and at risk for osteoporosis, and chemo can leech calcium from the bones too, so he decided to give me an infusion of Zometa at my next appointment. This is a drug usually used in people who have bone mets but he said they are now starting to see value in the adjuvent setting, and it may be another tool in the arsenal against a recurrence of cancer.

As is the dreaded tamoxofen. As much as it has diminished my quality of life, the only other drug in its class has the same side effects. He said all the symptoms I'm having are symptoms of estrogen depletion, which is what tamoxifen is supposed to do.

Still trying to weasel out of the drug, I mentioned that I had heard that some HER2+ cancer patients don't get benefit from it, and I knew there was a blood test to tell if I was one of them. He explained that some don't metabolize it properly. But, because I was having the symptoms I was - it's unlikely that I'm one of them. If you don't metabolize it - no side effects.

He said, "Cancer is sneaky and likes to live, and if we block the HER2 pathway with herceptin, than it might want to take the estrogen highway unless we block it with tamoxifen."

I liked the imagery enough to continue to take it.

In the end, he spent about 45 minutes with me. Pretty impressive for a physician.

So, while I didn't get to dump the drug I wanted to dump, I did get new ones. Zometa in three weeks. He strongly suggested I take calcium and vitamin D for my bones. And, I ended up with a prescription for percocet for the bone pain.

I've yet to fill it, and I didn't ask for it. But my nurse - to whom I also complained about the bone pain - went back and asked for it for me, which was kind of him.

Once my surgery is done, maybe I can take a yoga class and maybe it will help this bone pain. Maybe we can get a hot tub to ease the aching.

But for now, pain medicine will have to do.

So, I got some new drugs. That's the life of a cancer patient.
.

8 comments:

  1. I'm happy for you that Dr. Blair is in your camp. Having a good oncologist can make the rest of the process move along. Hang in there, and be thankful that you don't have docs that don't want Medicare pts. any more...............:-( Betty

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  2. Dr. Blair does take medicare. When I first started going, people were coming from 100 miles away - just to get a bag of saline! I couldn't believe it but then one guy told me they were medicare patients they traveled far because this was the place that they could come.

    I fear as government healthcare becomes the norm, more and more doctors are going to choose cash-only patients, like my plastic surgeon. Concierge medicine will become more and more popular. It's hard to blame them, with ten years of training and hundreds of thousands in student loans. Nobody as skilled as they are wants to be told what to do by some government paper-pusher.

    But, that will leave the vast majority of us in the dust and left with too few doctors and too many rivals for their time.

    But, this isn't a political blog and I don't know the system that well to really comment.

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  3. If I haven't mentioned it already take a look at the Oxford Oncology study regarding chemo induced amenorhea. If you've had this, Tamoxifen may not be necessary. http://annonc.oxfordjournals.org/content/16/8/1283.full
    In my case, pre-menopausal status returned 8 months following the end of TCH, so Tamxifen and I are fighting one another again. Argh.

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  4. hey Ann. We may be zometa buddies. I'm still waiting to get my first infusion. From what I hear, you might need to block out a few days after it. The first one is usually described as being "run over by a truck". Supposedly lots of hydration and a slower drip can help. Whatever it takes to kick cancer's ass.

    Clarice

    P.S. Thanks to Femera I feel like a human barometer - a very old one, but creaky not cranky.

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  5. I have 6 Zometas under my belt (and posted on one of your earlier blogs that you should look it up! I'm glad you're getting it!) I think the pain level depends on the person, some never have pain. My experience is two days after my infusion I have achey muscles, like I worked out really really (really) hard. Hot bath, OTC pain meds get me through. The 5th and 6th infusion were much easier.

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  6. Koryn, I do remember your telling me about that, but I forgot to ask my doctor. Next time.

    I also read some studies being done on some siberian rhubarb that helps hot flashes - ERr-731. I meant to ask him about that too but forgot. I might just get some anyway - there is no estrogen in it and it shouldn't hurt me.

    I didn't know Zometa hurt! He said one of the side effects was bone pain but since I alrady have bone pain I wasn't concerned about it. I didn't know it could be worse than what I am already experiencing.

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  7. Great post, thank you for sharing. I never used to take more than a Motirn or 2 for headaches. But with Breast Cancer and then a Recurrence all happening in 2 years I learned to use drugs to my advantage, or at least try to. (I wrote about it in my blog post - Better Living Through Chemistry) Sometimes we need the pain killer or the sleeping aid or the anit-anxiety pill. It's okay in my book, it is helpful to me. I need my sleep to recover and if a little pill is going to help then okay, I'll do it, as needed.

    And don't discount the possibility of depression. It may rear it's ugly head as it does for many, many cancer survivors. I have battled it since my first treatments ended and continue to battle, with the help of friends, family and a therapist, but no drugs yet:)

    Best of luck to you.
    Debbie

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  8. I have the mild soreness 2 days after my zometa infusion but it went away quickly and have had no other side effects since then. Since I was triple negative, there's no herceptin or tamoxifen for me though. I did have a hysterectomy and oopherectomy 2 months ago though to eliminate the estrogen pathway and the risk associated with gyn cancers in case there was an undetectible genetic component (triple neg is highly associated with genetic and dna involved breast cancer)...I've been menopausal since last july from chemo and still have the hot flashes but they don't bother me too much except when I have my arm bandaged (lymphedema)...anyway, with zometa they say no major dental work (regular cleanings are OK) to reduce risk associated with the osteocrenosis (sp?) of the jaw.

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