Tuesday, May 25, 2010

Sitting Here In Limbo

Just to let you know how things are going around these parts, well, uh, we don't know quite yet.  The surgery was the 13th of May, the tissue from the malignant node was sent to UW thereafter, and the results are not back yet.  Waiting is excruciating.  Let me tell you a little story why.

I'm on several internet sites that are out there for folks who have been diagnosed with lung cancer.  One site, http://www.cancergrace.org/ is excellent--organized and run by oncologists.  Another site, http://www.inspire.com/  is more touchy feely and overrun with folks who are determined to talk about and praise homeopathic and naturopathic treatments. Many of the more recent members in this lung cancer lounge have very little good to say about big Pharma or the established medical profession.  It wasn't always like this when I first joined inspire back in January, but in the past 3 months the voices of the Gerson and laetrile advocates have been drowning out those like me who are supporters of traditional allopathic medicine  and who think that medical treatments need to be rigorously tested before being prescribed.  

But given the current survival rates for lung cancer, it feels a lot like whistling past the graveyard.  Because even where there is positive response to lung cancer treatment, these results are measured in days.  Take a look at the conclusions in a good article written about what happens when you drop the dosage of Iressa or Tarceva in patients whose tumors are responding but the patients are suffering from bad side effects.  This is found at cancergrace and was written to give the lay person a better understanding of recent research in the field, by Seattle oncologist, Dr. Jack West, one of the best lung cancer specialists around:

The retrospective analysis compares the results of 52 (46%) of patients who continued at full dose Iressa with the 62 (54% (!!)) who had a dose-reduction of Iressa, generally switching to once every two day treatment (because there are no lower dose tablets of gefitinib than 250 mg).

The analysis showed no significant difference at all in outcomes, and even a numerically longer median progression-free survival of 351 days vs. 301 days, and median overall survival of 928 days vs. 852 days, for the lower dose vs. full dose recipients, respectively.

This doesn’t mean that lower dosing is a superior strategy (these are not close to statistically significant differences, and the groups aren’t huge), but it should allay anyone’s fears that the people who need to reduce dose of their EGFR inhibitor due to challenging side effects are compromising their treatment — at least for patients who have tumors with an EGFR mutation.

So, in the best case scenario, where the drug is working to suppress the cancer the median overall survival rate is less than three years! 

Lung cancer is an implacable foe, one that does not rest.  It seems immune to most of our current treatment regimens.  And I think this is the cause of much of the hysteria and the adoption of unproven and dangerous treatments by many lung cancer patients, not just those on inspire. Early on in my time online with inspire, I made the acquaintanceship of a very nice young fellow named Joe.  He was 24 and his mom had been diagnosed with late stage lung cancer.  She died on May 22, 2010, 15 months after her diagnosis.  She was my age or younger from what I can tell.  This is normal for the course of the lung cancer.  But, naturally, Joe is devastated.  15 months.  It's like compressing the next 20+ years that I thought I would have, into less than 2.  And 8 months have gone by so far for me.  I try not to go there and refuse to think about what effect my disease progression and death will have on my own children, who are 24, 23 and 20. 

At present, I have no treatment for my lung cancer.  There is no radiation or chemotherapy scheduled or any prescribed drugs.  I am simply waiting for the EGFR results to come back before new plans can be made.  And if the EGFR results are negative, plans will still have to wait because then I have to go through an additional set of tests for the ALK mutation, and they can also take quite a bit of time.  Finally, the chances that I will have the ALK mutation, despite Dr. M's optimism, remains very slim.  Only 3-4% of the population of lung cancer sufferers have this mutation.  But the drug results are so incredibly positive that it would be foolish not to try for it.  Again, hope winning out over reality.  But this time, it is in the context of a medical treatment that has solid clinical results underpinning its use.

If I don't qualify for the ALK meds, then I will have to consider other less fun options for my plan.  Like more chemotherapy using other drugs, or radiation to the tumors.  Both of these are severe treatments which also do not have very good returns on them.  But they are something.  And this something has been determined to be better than nothing.  At least for now.

What this all boils down to, is that my life has been reduced to a series of trade offs.  In exchange for hopefully, additional months of life, I give up my sense of taste, my hearing, and my peripheral sensations to take chemotherapy.  I give up my clear, normal skin, and thick hair to take the Tarceva, also supposedly for additional months. I have an operation on my paralyzed vocal cord, and it gives me back half a voice but I've still lost my ability to sing.  A malignant lymph node is surgically removed for testing, and I am left with a shoulder that is numb and exquisitely painful around the edges.  Although this numbness should be temporary, it's been 12 days now.  As the disease progresses, the trade offs will become more dire.  Eventually there will be nothing more to trade off.  Basically, this is the normal aging process on steroids. 

This is why waiting sucks big time right now.  Because there is no big time left.


Bill said...

Mo, I'm sorry you have to play this waiting game. Many of us who lurk at NNC are pulling for you.

Susan said...

You express it so poignantly and so well in that next-to-last paragraph. I wish I could send you *real* strength, but I'm sending you all the virtual strength and prayers that I can.

Olive said...

I hope the results come back really soon -- they shouldn't have told you 5 days if they didn't mean it -- and that for once it's the result you want. All love, prayers, and hugs to you.

Anonymous said...

Strength and courage. Your elegant descriptions of your experience will benefit many.

Katherine said...

GinaMoe: You have an astonishing way of conveying the gravity of your situation without a hint of melodrama. I am amazed and admiring of your writing skill and your ability to discuss what is happening. You have helped me to think about life and death. I lack the imagination to think of anything that I can do to mitigate the bad that you have to confront now, but I hope that you will not be shy about asking anyone for anything.