April 20, 2012

Bad news

Yesterday I saw Dr G and got the results of Tuesday's brain MRI and labs. The MRI suggested progression in the central nervous system, meaning I have new, and growing, brain mets. My labs were significantly higher than eight weeks ago, with tumor marker CA 27.29 at 214 and CEA at 40. (Both had been at or near normal.) Clearly this clinical trial is inadequate to treat my cancer.

Dr G and I discussed several chemotherapy drugs that cross the blood-brain barrier or which have a track record for treatment of brain metastases. We also discussed further radiation therapy. Gamma knife may be an option again. Whole brain radiation (WBR) is not an option, as it might likely cause dementia. (My radiation oncologist agrees.)

Although I took the final FDG PET scan of the trial on Monday, no results were available in my electronic record at SCCA. Having any more information might have helped in yesterday's difficult conversation with Dr G. It looks like I will have to wait until after the FES PET scan next week to get information from Dr Gadi. Then I'll see Dr G again to make a plan.

This news was like receiving punch in the stomach. Last year, my complaints of "feeling stupid" led to Dr G ordering a brain MRI. This time I have no symptoms. Indeed, I feel great on the trial regimen. But it's so not working.

I hate the waiting game, when I don't have all the information, just enough to scare the daylights out of me. I was a little taken aback when Dr G asked me directly what Iw anted to do. I think this was "doctor-speak" for was I ready to stop all treatment.

I'm not ready to stop treatment yet, but neither am I interested in treatment which will impair my quality of life drastically. (Hence no WBR, or chemo which would increase my neuropathy.)

Dr G made an analogy to the Battle of the Bulge, which was the last major Nazi offensive against the Allies in World War Two. I could now be facing my last effort to pound my cancer down into submission. 

I hate these battle images, but I did have a talk with my cancer last night. I told my cancer that if it gained so much ground, it would lose the ultimate battle. If it kills me, then it dies too. 

Years ago, not long after my mets diagnosis, I told my cancer that as long as it behaved, it could have a place in my body. The moment it acted up, I would hit it with everything at my disposal. Well, my cancer has been more or less quiet for almost a decade. I am prepared to hit it hard now, but still give it living space, if it will make the deal.


  1. Well Crap. I'm sorry to hear this latest news. I hate doctor speak - maybe next time he tries it, grab the bull by the horns and tell him if he wants to ask you that, to just say it. I vote on pushing your cancer into a little tiny closet. Big hugs to you. You are an inspiration to many. Anytime I have a friend who is told they have mets, I say go read your blog.

  2. Aw, Jill. I'm not sure what to say. I've been watching you manage your cancer for some time now, and I am always humbled by your matter of fact approach. I can't help but believe that despite how grave things appear at the moment, in the end, 'matter of fact' will again triumph.

  3. Anonymous7:30 PM

    Thank you for your honesty and zest for life. In recent weeks my husband and his sister were both diagnosed with cancer and they are just beginning their journey. You give me hope, strength, and courage to face whatever the future holds because you are handling living so well. You make my heart smile.

  4. Thinking of you. A fan in Jerusalem

  5. Anonymous10:31 PM

    So sorry to read this, Jill. You have a great medical team and obviously keep up with all the treatment-related issues and probably get loads of unsolicited advice. But has your cancer been retested for HER2 lately? (As you likely know, status can change over time.) I ask because there are lots of options for HER2-positive ladies these days. You and Rik are in my thoughts.


  6. Anonymous11:37 AM

    I had WBR & Gamma Knife last fall &, so far, no dementia! I am now on a regimen of Xeloda & Tykerb with great success! I have Her2+ & liver mets.


  7. Anonymous1:02 PM

    I'd advise your cancer to comply with your wishes and get inline quickly. I know that you are not kidding when you say you will hit it with all you've got. Sending you love and strength... stacy