My journey to shoot for the moon.

Cancer Update – 2/22/12

Really not much to report.  Mike drove Chris to U of CO Hospital this morning.  He had his MRI.  His radiation wasn’t scheduled until 3.  So Mike drove him home.  I met Chris there.  Since he wasn’t being sedated, he didn’t need anyone to drive him back to the hospital.  He left at 2:30 and was home by 5:15.  The tumors in Chris’ brain did not grow.  So that is a good thing.

Now we wait to see how he feels. . .


Comments on: "Cancer Update – 2/22/12" (5)

  1. Robin, A gentleman left a comment on my blog that was really meant for you. Here it is:

    Gene Burges | February 22, 2012 at 7:38 pm | Reply | Edit
    I am a novice blogger but wanted to comment in response to Robin’s post. I have Stage IV NSCLC (ALK pos) diagnosed in April 2009, treated initially with cis/Alimta, then radiation, and joined the crizotinib trial at UCDenver (I live in SC so this is quite a lot of traveling) in Sept 2010. I developed a second mutation relatively quickly, had an adrenalectomy, more radiation, and prepared to start LDK378. Baseline brain MRI showed previously unknown mets and I had SRS but subsequent MRI showed numerous additional small mets. I am a physician and was very hesitant to have total brain irradiation. My wonderful Colorado oncologist persuaded Novartis to allow me into the study. After 3 months on drug the number of brain lesions had decreased by about 2/3. My SC neurosurgeon and neuroradiologist have been really impressed with this response as have Dr Camidge and I. I will have another brain scan in 6 weeks along with my next PET. That will give us much better info on how effective LDK is in crossing the blood/brain barrier. I had a PET this week which showed other areas mostly stable – not the miracle cure we all hope for but lack of progression is always good. Every patient is different in clinical picture and life situation (I am 65 which makes a difference in approach) and I am sure Dr Camidge or whoever you see at UC Denver is approaching your brain involvement in the appropriate manner for what you have. I only wanted to offer encouragement for the possible benefits of LDK 378 in the brain.

    Best, Linnea


  2. The tumors in Chris’ brain have not grown; you and he must be relieved by this news. The response sent to Linnea must have made you feel good.

    Blessings – Maxi


  3. Gene Burges said:


    I am Gene Burges, a 65 yo female (so not a gentleman!) dermatologist (retired just this month) with Stage IV NSCLC as I discussed above. My tumor was found positive at UC Denver for ALK shortly after diagnosis and I have been emailing and then seeing Dr Camidge there for 2 years, traveling back and forth from Charleston, SC sometimes as frequently as weekly at the beginning of the LDK378 trial but usually every 6-8 weeks. You are very fortunate to live so close to a center with expertise in non-smoker’s lung cancer. My brain mets were discovered as I became resistant to crizotinib and was being worked up for the LDK378 trial. I had 5 separate sites treated with SRS here at home and then multiple small mets were found on the follow up MRI. I was very fortunate to be allowed into the LDK trial and we will see on the next MRI in 6 weeks if the benefits seen after 3 months hold up. Unfortunately, Novartis at this point is not allowing additional radiation if there is progression on the drug so they will put me out of the trial if I need more brain sites treated or any sites elsewhere. I plan to enjoy the next 6 weeks and handle whatever comes up then when the time comes (often easier said than done).

    I hope the radiation is well tolerated by your husband – is it SRS or total brain irradiation? I had fairly significant nausea when I had multiple sites treated though the radiation oncologist said that was not usual. I also have significant GI side effects from the LDK378 and had the same liver abnormalities that Linnea experienced. I found crizotinib to be much better tolerated. However, if this drug does work on the brain, I am more than happy to deal with the side effects.

    Please keep me posted on your husband’s progress and ask any questions that I might be able to help you with. Perhaps we can meet on one of my visits to Colorado. I expect my next trip to be in early April.

    I am not at all accomplished as a blogger so do let me know if this reaches you and if there is another way I should respond.



    • Hi Gene –
      You are doing great with responding to blogs! You can continue replying to my blog posts, or you can email me directly at

      My husband, Chris (he’s 43 now), was diagnosed in Oct. 2009. My brother is a Pulmonologist at the U of MI (Ann Arbor) and his Chief of Staff knew Dr. Bunn. Obviously, this helped in getting Chris in a good place for treatment. We live in Parker, about 20 minutes south of the hospital.

      I blog regularly. Often 3-5 posts per week. Many times my posts are about my teaching or our kids (I just got my first teaching position in January). So, you can either email me and I will add you to my update list or you can follow the blog.

      Chris had SRS yesterday – there were two spots. So far, so good as far as side effects go. He has had nausea and GI issues since he started the trial (I think that it is 20 months now – prior to the trial he had chemo and an IV trial drug – can’t remember which one). He’s also had issues with fatigue. But believe it or not, he goes to work most days.

      Let me know when you are in town. I teach in Castle Rock (south of Denver if you aren’t familiar with the area – and farther south than Parker where we live) but I only teach part-time, so I might be able to get out to meet you.

      Hopefully, you’ll have good news after your next scan.


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