20%

My neck lumps are growing.  Or at least the one on the side is.  There are two, one deep in the neck right around the scar where they biopsied the original lump, and another one poking out at the side. They used to be lymph nodes and are now tumours, and frankly they scare the hell out of me so I touch them all the time to see what they’re up to.  Evidently they’re up to no good.

 

Problem is, yesterday I found out that if my tumours grow by more than 20% I’m off the clinical trial. Finis. Apparently 20% growth means that my body is not responding to the study drug and in a clinical trial if your body isn’t responding, it’s sayonara study subject, next please.

 

When I found out about the 20% growth cap, the internal panic-valve immediately opened and the inner freak-out commenced.  Off the study?  No more tumour-targeted miracle drugs to precipitate cellular suicide? No more sci-fi magic potion??  It would be too overwhelming a disappointment to contemplate, or even to be able to call a “disappointment” without grossly understating what it would do to me psychologically.

 

I know there are other options, like chemo, radiation and possibly even surgery –  all of which I have previously had, and in spite of which my cancer metastasized.  The bottom line is that I’ve put so much faith in this study and been so excited to be a test subject for this new generation of cancer drugs, that going back to more conventional treatments might feel a little like trading smart bombs for mustard gas.  Whether that’s a warped perception (wouldn’t be my first) borne of mistrust and frustration that the cancer metastasized is a question for another day.  Today I’m about 20% more concerned with just staying on this study because, whatever the treatment is, I just don’t want to be declared “unresponsive” again.  It terrifies me.

 

So these bumps have got to stop growing — or, preferably, start shrinking. They just have to. Any suggestions?  I’ll do anything.  Rub voodoo salves on them, drink yak urine, hold crystals up to my neck, whatever, I’m all ears.  And neck bumps.

 

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4 Comments

Filed under Living with Breast Cancer

4 responses to “20%

  1. geminigirl

    Leanne,

    I wish I had some words of wisdom, other than don’t drink yak urine (eewwww). Seriously, though, we are children of the latter part of the 20th century and think smart bombs are always stronger, but I’ve read mustard gas did significant damage.

    I know you don’t really care which med zaps those tumors, you just want them effing gone! I feel your “panic”. I suspect it’s that cancer engendered dark, overwhelming “what do I do?” feeling.

    Keep doing what you’re doing. Write, talk, fight, cry, do whatever you need to do to get through the worry and fear. I am all about the visualization, but that’s me. Who knows if it works. But, I visualizing your body attacking those tumors with tanks, dragons and really sharp, pointy spears!

    By the way, eff unresponsive!! That wouldn’t be you!!

    Love, Gemini

  2. carly

    …well, it’s not quite yak urine (haha), but there’s some really great info. on integrative, holistic-ish healing on the website, crazysexylife.com. There are links and reading lists within the site with information about great things like juicing and kale smoothies–yikes!. Actually I’ve tried the Green Juice: quite good. I don’t know if you’ve heard of Kris Carr, who runs the site (and has books: “Crazy, Sexy,Cancer”), but there are some good, hopeful things to read about. Also, I found the book by Dr. David Servan-Schreiber to be very informative and helpful.

    Anyways, I think you’re great! We’re thinking about you and sending positive, healing thoughts your way!

    Carly

  3. Jane Hall

    I realize that you don’t want to go back to the “old way” of treatment but can’t radiation be used to shrink the tumours while still receiving the Panobinostat? Kind of like a double whammy to zap ’em!

    Either way you choose, I’m thinking of you every day and sending cyber-healing thoughts to you. Kick ass girl!!!

  4. lcoppen

    May I say how much I appreciate all the suggestions regarding ways to arrest the rather alarming developments in my neck? On and off this blog, so many people in my life have now recommended “Crazy Sexy Cancer” that I’m teetering on the brink of finally reading the damn thing. I have gone so far as to look up the website. But that’s as far as I’m willing to go right now (specifically, the homepage.) I can be very stubborn, as my family friends will attest and the cancer will apparently have to learn the hard way. Why I am being stubborn on this particular matter is a story for another time… Maybe.

    I will ask about concurrent treatment but I think I already know the answer – because this is a trial they need to know that their drug is the ONLY thing that is working (and it will, right?) to shrink my tumours. Otherwise the stats are off and the stuff will never be FDA or Canada Health approved.

    Oh and thank-you also (Gemini) for “eff unresponsive!” — saying that feels better already!!

    – leanne

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