Monday, May 17, 2010

Dancing with NED - No Evidence of Disease

Today we got the awesome news that I'm officially NED - No Evidence of Disease. We got to see an axial view of the PET scan that I didn't know how to interpret (slices of my body from the head down). We looked at the March and May scans and it was really obvious how much the chemo has eliminated all the hot spots that indicate metabolic activity indicative of cancer growth.

So, in a word - hurray! Just the news that we were hoping to get. So this means (probably), no radiation and I'll be done with this whole thing in another 98 days.

But the news wasn't completely positive... We're not done with this journey yet - I have 7 more treatments after today over the next 14 weeks and my blood work isn't great - white blood cell counts continue to go down so I'm going to get some Neulasta to stimulate white blood cell growth. This is a step we've been trying to avoid because there's some anecdotal evidence that an interaction bewteen Neulasta and Bleomycin can cause some lung toxicity. So I'm getting a smaller dose of Neulasta than normal but it will hopefully get my white blood cell count to improve.

Also, as I noted in a previous post, my port looks to be a problem so we're taking it out. I'll get a PICC line which requires more care as the port part of the setup is outside your body. I asked the nurse how many port fails and she said it was a pretty small number.Probably < 3%? So I'm kind of unlucky to have this problem and combined with my low white blood cell count it's concerning. So, we'll change course a bit, get the PICC line and see how that works. The good news is that I'm getting the full dose of meds today, so that's the important thing to concentrate on.

So I have no evidence of disease which is awesome!


  1. NED is a great pal to have around...glad to hear he decided to show up.

    I'd say that part of the reason for your port's unhappiness is strongly related to your relative success and tolerance of chemo so far: you don't have the usual American layer of extra that would house the port better. I'll take some port rearrangement paired with chemo. success and Papa mobility over a stable port and laid up Geo any day.

    I'm definitely giving lots of thanks to God, Allah, Buddha, and the Goddess of life giving...let's hope we finish the second half of this game just as strongly!

    love you, C

  2. Great news! Gotta love that NED. Couldn't ask for a better report on the PET scan.
    I am thinking of you today with your new round of meds... and envisioning the multiplication of lots of new wonderful white blood cells.
    98 more days... And tomorrow it will be 97.
    I'm here for all of it!
    Love you

  3. Yeah, the NED indication is huge. To be honest though, I'm kind of obsessing about going the PICC line route. I think it will suck and I'm bummed that I'm losing my port. But the alternatives (chest infection, not getting all the chemo) are way worse so in terms of risk management this does seem like the best way forward. So time to man up and stop whining! Which I will do now.