When There is no Cure

Yesterday I was reading Susan’s post at Toddler Planet talking about a clinical trial she’s just entered for breast cancer (Susan I hope it’s ok that I linked to you?). Anyway, she’s starting a new combo drug trial – one of them is Nexavar which I’ve been taking since April.

She said she’s having to change her perspective from a treatment that cures to a treatment that “keeps her alive”. It’s not an easy thing to deal with. I can’t stop thinking about what she wrote because it’s what I went through almost 5 yrs ago, and if I’m being honest, what I still go through today.

She has breast cancer, I have gastrointestinal stromal tumor – 2 very different cancers – but the fact that our treatments are over lapping speaks to the new direction of cancer treatments. The targeted therapies.

People who aren’t taking them don’t know about them. It’s NOT traditional chemo or radiation. There’s not a set 12 round time frame sort of thing because there’s no end to treatment. It’s a daily pill forever, or until we develop resistance.

It’s not what people are used to and in my experience, it bothers them. 

When you tell somebody you have cancer they automatically ask about a cure. We’re programmed to put all the emphasis on that one word – cure.

But what if there isn’t one? What if your cancer isn’t curable? It leads to so many uncomfortable conversations. My father-in-law whom I love dearly always says “well, when you get off those drugs……”

I don’t have the heart to honestly tell him that when I’m off the drugs, it will mean there are no more options and I’ll be wrapping things up here. I’ve tried but I think he blocks it.

But it’s ok not to be cured. As much as having cancer can be ok. Targeted therapies have replaced incurable with treatable. Stable is good. When I began the first drug, Gleevec, I was literally filled with cancer. If there was tissue in my abdomen, it had mets on it. My PET scan was not pretty.

By my first CT scan 3 months in, after my daily magic pill, every last one of those little fuckers had shrunk by at least 30%. We were headed in the right direction.

Before my magic pills, my cancer wasn’t even treatable. The prognosis was 12-18 months and the only option was surgery as needed – if the tumors were resectable. That’s why I’m ok with not being cured, even though I wish like hell I was. But man it’s still so hard to explain.

People still ask me if I’m done with treatment yet, if my cancer is gone. I have to tell them that no,  it’s not gone and never will be. They don’t know how respond.

I’m living with cancer in my body – I’m permanently contaminated. I know it’s there because I’m reminded every time I take a pill. I can see the discomfort on their faces when I say that. (Well I don’t say it exactly like that.)

It used to bother me that I couldn’t  just do the traditional chemo & radiation thing. Then I watched so many others go through it – the carpet bombing of the entire body with poisons – and I was glad that I’ve, for the most part, maintained my quality of life. Even if I have had rough side effects.

Targeted therapies are designed to attack only the cancer cells. It’s like they go in and flip the “off switch” on tumors that are constantly “on” and feeding off our bodies. If they can shut off the power to the cells, ideally they’ll shrink or become stable. Less life-threatening, which is really all that matters right? The key words though are “just the cancer cells”.

With Nexavar, it’s designed to cut off the blood supply that feeds the tumors. Others like Gleevec are that off switch kind of thing that for me, turned the tumors cystic until they went away, shrunk or at least stopped growing.

But, the cancer is still there. I know one woman who has over 30 tumors on her liver alone. She’s been like that for almost 10 years. She was one of the first GIST patients in the Gleevec clinical trial and somehow she’s still on it. She’s never developed resistance. She’s seen two of her children go off to college when at one time she was in hospice.

They don’t work like that for everyone but I guess my take on it has always been to take each drug for as long as they’ll work. To squeeze as many years out of each treatment as I can. Yes, it still bothers me, a lot, when we lose yet another person off the GIST support site. But I’ve had to remind myself that I’m not them. I’m still here and feeling relatively ok.

When I first started this process, Gleevec was my only option but Sutent was about to be approved.  By the time I developed resistance to Gleevec (after 3 years) and had new tumor growth, I had more options. Research is like that, when they have success with what was once an untreatable cancer, the research money comes in a little easier.

I’m on option #4 now because 2 of them didn’t work at all. It’s been a rough year and a half since Gleevec resistance but #4 has worked for 10 months. It’s been long enough that option #5 was FDA approved and maybe there’s a #6. Another drug went from a clinical trial number to having an actual name last week. I’m ridiculously informed. I can’t help it.

When people ask me about a cure I have backup info to make them feel better when I say “no, it’s not curable – but it IS treatable”. It also makes me feel better.

The real beauty in all this is that these drugs were originally developed to treat other cancers. Gleevec was a leukemia drug. Nexavar is primarily a liver and kidney cancer treatment. Sutent is used to treat advanced kidney cancer. The fact that Nexavar is now being used for breast cancer only brings more attention to it. Research money going into one cancer can later be applied to another!

Rare cancers like GIST can be ignored except by the small number of people personally dealing with it either as a patient or caregiver, but the more these drugs are used to treat multiple cancers, the more we have a chance at getting the research dollars to keep them coming.

For the patient, it gives us more time. It turns our cancer from a fatal disease to a chronic illness. For how long? Who knows, but I’ll take whatever extra time I can get.

Sure I’m pissed off about it occasionally – who wouldn’t be. But you know what? If I’m here to bitch about hair thinning, foot cramps or too many hours spent in the bathroom, I’m also here for band concerts, birthdays and wedding anniversaries.

I may even get to be here for graduations, weddings and grandbabies!

It’s not a cure but it’s pretty damn close and I’m mostly ok with that.

Now if I could just get others to be ok with it we’d be set!

Update PS – I do still reserve the right to bitch and moan. Just because I’m cool with it today doesn’t mean I won’t go off the deep end when I reach my actual 5 yr cancerversary – cuz i always do. Or when the Nexavar stops working.


19 thoughts on “When There is no Cure

  1. Unfortunately, I think there are some people in this world that just won’t get it. My already-lacking-compassion future mother-in-law (can’t help but mention her husband too, who thought I was doing nothing with my life after college when I chose to stay home and take care of my dying aunt) asked about my aunt this past Christmas. I was baffled, really, and went on to tell her that she passed away April 2009. Her only response was “Well, that was a long time ago” and went on to try to calculate in her head how long ago that really was. For some people, I think things have to be black and white, straight-forward. Living with cancer almost seems unacceptable. It’s really unfortunate.

    Your post made me think of the great things my aunt was able to do before she passed. She lived with the cancer for 10-15 years and depending on the drug or treatment the cancer was apparent or not so much in that time. She got to see her only son graduate 8th grade, high school, and she was with him long enough to make sure he’d make it out okay. It was tough for him to get through school after her death, but in the past year, he’s actually gotten his pharmacy tech license and is working at (one of) the hospitals she worked at many years ago. When I think about it, her life was so fruitful not just for herself but for others that meant a lot to her.

    Just like my aunt, you too are an inspiration. I really believe that something drew me to your blog, maybe it was her from up above making sure I was on top of my game. Thank you.

    • You don’t need me to keep you on top of your game Jasmine – you’re already there! Thanks for telling me about your cousin – it gives me even more hope that I’ll get to see more of my girls’ futures.

    • Uh, i’m sorry, i think i may have lost your address. I can’t send fudge without it. I don’t suppose NYC has a general post office where they’ll just know you??

  2. Thank you so much for this. It is a fairly new thing, I think, being able to live with cancer, and it takes a bit of getting-your-head-around. But it’s much better than the alternative!
    Also, the longer one drug can keep you with us, the longer the researchers have to work on the next one and the next one and hopefully one day the actual cure.
    I love your attitude, and I hope you’re around not just for weddings and grandbabies, but grandbabies’ weddings!

    • It IS hard to come to grips with but please keep in mind that on Feb 19th I will have had 5 years to get used to this new way of thinking. I had no idea, when my oncologist came into my hospital room and said, “it’s not curable but we do have this new pill…..”, what my future (if i had one) would hold. I didn’t know there was anything in the middle of terminal and curable. Boy am I glad there is.

      The longer we hang on, the more options available…that’s a good thing 🙂 Grandbabies’ weddings…I like that!

  3. hi Annie
    love this post – as you may have seen on my blog or twitter I am waiting on a review to decide whether my IBC cancer has gone to my lungs. I have already had one recurrence and I always keep in mind a conversation I had with a Cancer Society Liaison Nurse at the time of starting treatment for that recurrence and that was that there are now many people living with cancer as a chronic condition – that last many years in and out of treatment or on continual treatment. thats the new normal we are all striving for

    • The new drugs are amazing. They’re tiring and so many times I wish I could just be cured when they start to wear me down, but don’t we all right!! In an ideal world, we’d all have that cure but if we can take whatever we need to, and thrive – not just survive – while we wait, I have to believe that end point WILL eventually be the pill that cures it all. Wouldn’t it be nice if none of us ever had to wait for lab and/or scan results again? I wish you all the best while you wait. If they start talking target therapies go for it!

  4. Pingback: the voices in my head | Get Out Gertrude!

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