MGH and genetic testing

The Cancer Center at Massachusetts General Hospital in Boston is where I receive my care.  At MGH, all primary lung adenocarcinomas are now routinely tested for mutations.  This is a very positive step toward a more personalized approach in the treatment of lung cancer.

A diagnosis of cancer is a double edged sword.  Traditional treatments have generally made the patient feel even sicker.  When I was diagnosed over four years ago, surgery was the first step.  I had a lower left lobectomy, which was the removal of the lower lobe of my left lung.  This was a very invasive procedure which took weeks to recover from (It should be noted that now surgeons are often able to perform VATS, Video Assisted Thoracoscopic Surgery–which is less invasive). It involved the spreading of my ribcage as well as removal of lymph nodes and bone for biopsies.  I spent days hooked up not only to an IV, but to a machine that removed the fluid from my lungs via two tubes in my back.  The incision for the lobectomy was almost a foot long, and although it was very skillfully done it took weeks to heal.

After nine days (my lung partially collapsed complicating things a bit) I returned home feeling as if I’d aged 40 years.  Because of my incisions, it was impossible to sleep in any position other than upright. We actually bought a lazyboy–rechristened the lazygirl, on the way home from the hospital for this purpose. My body was dealing with bone, muscle and nerve damage as well as the loss of a major organ.  No picnic.

And then–7 weeks later–chemo.  Even though I was staged a IB–my oncologist felt that the size of my tumor (5cm) dictated the necessity for adjuvant chemo.   I was given cisplatin–a platinum based chemo–in conjunction with taxotere. Cisplatin is a particularly rough chemo (and lung cancers are notoriously resistant to chemo), but given my younger age and relatively good health, it was felt that I could tolerate it.

The infusions took about 5 hours and were administered every three weeks for four cycles.  The taxotere infusion lasted an hour, and during this time I would keep my hands immersed in a bowl of ice.  This was a strategy suggested by the infusion nurse (Lisa!) to help prevent the neuropathy often associated with taxotere (which was also the chemo responsible for my hair loss).  It might have worked too–although I do have noticeable neuropathy in my feet–there is very little in my hands. By the time the cisplatin had all dripped into my veins, I would begin to feel out of it.  Nausea was not nearly as big a problem as I had feared. The anti nausea drugs worked quite well (until the 4th cycle) and made me sleepy too–and I certainly didn’t mind sleeping through as much of this as possible.

We would return to the hospital the next day for a shot of neulasta.  I can honestly say that much of this time I remember only vaguely–it was as if a heavy fog descended on me.  I would feel pretty awful in general for the first few days and only gradually get my strength back, and then it was time for another round. The side effects tend to intensify with each cycle, and by the fourth cycle I was struggling.  The foggy feeling persisted for almost a year–I’ll be sure to post on chemo brain at a later date.

I don’t want to scare anyone.  Surgery and chemo were difficult, but they were doable and I have long since recovered from most of the side effects (not including the removal of so much of my lung).  However, I think it is also fair to say that these treatments were hard.  Wouldn’t it be great if there were other options, like maybe a pill you could take?

This brings me back to MGH and genetic testing.  The objective of personalized medicine is to determine which treatments might be most effective for a patient before they are administered.  An unfortunate aspect of some traditional therapies (such as cisplatin) has been that they are not selective in approach and that the effect is systemic–you kill good cells along with the cancer cells. Targeted therapies, such as the clinical trial that I am enrolled in, have the potential to do less collateral damage.

Here is a link to the MGH web site where the genetic testing program is described:

The stories of two patients are highlighted.  One is myself.  The other is a gentleman that I have the pleasure of being acquainted with.  He has the EGFR mutation and his story is remarkable and an example of what is possible with personalized treatment.  Check it out.

3 responses to “MGH and genetic testing

  1. I am so glad you are writing all this out. You are so eloquent and matter of fact and I think that’s helpful. That lazygirl may have been one of your favorite things in the universe during that period!!

    ❤ jemesii

  2. I’m sure it’s difficult to remember when I wasn’t in the lazygirl or the hammock–but we got through it–no? Love you, Mom

  3. We got through it, and you got through it with a particularly striking amount of grace and strength. And looked shockingly hott with your bald head!


    ❤ jemesii

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