Sunday, 20 March 2016

"NED in The Head is Better Then Being Dead"

I know this sounds like a twisted Dr. Seuss title, but I have to give props to my hubbies friend who cleverly came up with the ending. This gentleman's name ends in "eff," is missing only one letter at the beginning, and rhymes with deaf!! However, I'm all for anonymity, hence why I didn't straight up mention his name;)

I feel I need to clarify my most recent scans as I think that some people got a little confused, but that's ok as I'll explain. I am literally NED (no evidence of disease) in my head as NOTHING was visible on the MRI, however this is ONLY in my head. Don't get me wrong, the meds are working super duper well systemically as my bone mets are chilling and not super excited. I'll try my best to explain, and break this down so it's easy to understand.

When you get a PET scan they inject a radioactive substance that is essentially glucose (the technical term is FDG: fluorodeoxyglucose). The theory is that cancer picks up more of this radioactive tracer and then lights up on the scan...and...BINGO that's the sites where you have cancer. Maybe BINGO isn't the best word to use as we don't win anything good, but rather get a deadly disease, toxic drugs, and...well...essentially nothing else. Cancer lights up like hot spots on a PET scan because it is highly metabolically active. Visualizing the brain is better done with an MRI as our brains uptake a lot of glucose anyways, so it's difficult to visualize mets. I've heard people say that to visualize brain mets on a PET is equivalent to writing with a white marker on white paper: everything just blends in and makes it difficult to spot cancer. Therefore, when I had my PET scan it showed low metabolic activity in my hip and sternum. Plus, after having the previous two PETs showing cancer in my clavicle, this radiologist stated that the cancer was actually in my first rib and never in my clavicle. I like knowing where cancer is residing, and now it's apparently in the rib. It's sad to think that my reaction is simply "oh well at least it's just another bone." Never thought I'd be quite so nonchalant about where my cancer is, but these are the things I need to just accept. Now, back to PET scans...If it showed "high" metabolic activity that would be more indicative of cancer being a pain in my ass and deciding to riot and possibly "break out." Therefore, when it showed "low" activity that simply meant that the cancer is there but simply chilling out....kind of like what I do when I go on a beach vacation!! I plant myself on the beach, with a fruity drink in hand, and simply relax without getting up. Well, that's essentially what my cancer is doing. It's being lazy and not really on the move looking for more real estate!! I LOVE lazy cancer. This equates to being stable mable!! A cancer patients only dream.

Now onto my brain. NED in my head means my treatment is working so phenomenally well that we can't see cancer!!! This means the cancer has been beaten back far enough that it is not visible on the scan. Yaaay!!! This does NOT mean I am cured and cancer free...I mean I wish, but this is the reality that so many of us live with. I feel I need to clarify as when I told a family friend she proceeded to say, "that's wonderful you're cured and you can stop all your medications." Ummmm....I felt bad breaking her naivety bubble, but I feel the reality of this disease needs to be spoken about because who will ever donate to our cause if they think it's curable?? Sadly, I will always have cancer. It has spread and I just happen to be lucky enough to be on meds that are working so well on my subtype, at the moment. It's not a matter of "if" I'll fail my current therapy, but rather "when." However, I can never stop treatment. If I were to stop then the cancer would progress and kill me. That's a guarantee, hence why I am in treatment for LIFE, along with thousands of others who are living with metastatic breast cancer.

Now with all this wonderful news we needed to figure out how to manage the toxicity better. The meds that are working so well are also making my life less then ideal. It's hard to complain about this, but I can't just accept living life to simply existing, having a heartbeat, and being alive. These treatments that keep us alive are HARD, and my current therapy is cumulative, meaning it just gets harder and harder the longer I'm on it. I started back on chemo (Xeloda, also known as Capecitabine) just over a week ago after a 3 week break due to the toxicity. So here is the plan moving forward. There is no chance in hell I will switch treatments while it's still working as I am very aware that my treatments are finite. Therefore, we are switching my chemo cycles from two weeks on & one week off, to one week on & one week off. We had to bump the chemo dose for this type of cycle, but we are hoping less builds up so the side effects don't become so horrible. After two weeks, I will reintroduce Tykerb (Lapatinib) at a lower dose. Funny thing is, my most troublesome side effects are likely not even due to chemo but due to the Tykerb. This drug is giving me a tough time. By staggering the reintroduction of each we will have a better idea as to which drug is causing what side effect. Right now I can say that the chemo is causing my nausea...everyday... with moments where it peaks, and I need to lay down or I'll vomit. As well, I thought it was due to the time change that I have been feeling overwhelmingly exhausted, but nope I can attribute that to the chemo as well. I can and I will live with these side effects because I know it could be waaaay worse. We need to find my "sweet spot" because I can't go on with this regimen feeling how I did the last little while. I've only been searching for this sweet spot for the last 8 months!!!!!!!!!!! I just want to find my sweet spot, settle into it, and ride this wave of life, so that maybe I could live a day where I'm not reminded of the fact that I have cancer. That would be super sweet:).

7 comments:

  1. I hope you find your sweet spot soon and not have to feel so crappy all the time. You did a good job of explaining this complicated disease, and what the scans do.

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    1. Thank you Ginger. I'm really hoping I find my sweet spot now too!!

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  2. You write so beautifully and you have a way with words.
    Good news regarding the scan and I hope you find your sweet spot on the weekly Xeloda schedule. Boo @ nausea and fatigue, I hope those get better soon as well xx

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    1. Awe...thank you so much for your kind words. Xo

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  3. You write so beautifully and you have a way with words.
    Good news regarding the scan and I hope you find your sweet spot on the weekly Xeloda schedule. Boo @ nausea and fatigue, I hope those get better soon as well xx

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  4. Tykerb was definitely the naughty child in my life. I am like you, I would hang on and try and figure out how to make the treatment less miserable than give it up. Working is good! NED in the head is even better! <3

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    1. Ya...Tykerb is less then enjoyable, but hoping this new dose does the trick!! I know it could be much, much worse so I'll take it...I just hope this lower dose of Tykerb still works!!

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