Yesterday's Doctor's Visit - What's Next and What to Expect

I have been having some challenges with Google lately where I haven't been able to get into my blog to enter new posts, so this is part of the reason for the delay in getting this posting out today.

The Short Version

Yesterday's appointment with Dr. Bonomi was very positive.  Basically, the Tarceva has a 70-80% chance of successfully containing and/or shrinking and/or eliminating the cancer cells in both my lung and brain and with relatively minor side effects of a rash on my face/scalp/chest/neck; diarrhea; dry skin and some mild fatigue.  When my hair does grow back, it will likely be wavy or curly and thinner by the temples.   It will take a long time to see progress but slow and steady wins the race.  When I see Dr. Bonomi again on November 2, we will do some blood work to make sure things are holding steady, but won't really have any tests that show us what progress we are making.  Those will occur in the appointment I will have with him after Thanksgiving, where we will do an MRI and CAT scan to see the number and size of tumors and lesions at that point.  So it's really a waiting game until that point.  In the meantime, we just find the best way to treat and minimize the side effects.  The other thing that came out of the appointment is we've decided to wean me off the steroids since they don't seem to be doing much at this point anyway.  My hand is still very shaky.  So over the course of the next 9 days I will ramp down the dosage and then be done with the steroids.  Yeah!

The Longer Story

My visit started with getting some baseline blood work to look for any tumor markers in the blood and make sure my liver and liver enzymes were at healthy levels.  Some tumors shed proteins which show up in the blood and this can be used to track the tumors' activity over time, with a reduced rate of these proteins indicating the tumors are shrinking.  The results of my blood work did not show any elevated proteins from the tumor activity, so this probably won't be a good source of information for my progress going forward.  The reason for the liver testing is that Tarceva is metabolized through the liver and they monitor the liver function to make sure there are no problems.  This will be a regular part of my blood work tests for each visit. 

I also agreed to submit a sample of blood for a study the hospital is doing to identify a set of tumor markers released in the blood to help determine which treatment strategy is best for individuals.  The markers may also be used to diagnose lung cancer at an earlier stage.  Although this won't affect my treatment at all, anything I can do to advance the cause of diagnosing, treating and ultimately eradicating this disease is a worthwhile investment in my book.

Most of my visit at Rush was with Dr. Bonomi's nurse, Irene, who is very patient, thorough and detailed with covering all the important information I needed to know about my treatment.  We first talked about the side effects and when they would likely occur.  I will probably start to see the rash in about a week.  It should peak in severity in 4-6 weeks and then subside in about two months.  I will work with my dermatologist to try to mediate the effects of the rash, but Irene already offered some suggestions for some topical antibiotics.  Ideally, I would also take an oral antibiotic but I have allergies to the most common ones - penicillin and sulfa antibiotics, so this will pose a challenge.

The dry skin will be a constant.  There are likely to be some changes in my nails - making them weaker.  And the hair, when it grows back, will likely be curly or wavy as long as I am on the Tarceva.  There is also a possibility of some "peach fuzz" light facial hair.  The diarrhea has more than a 50% likelihood of occurence, but should not be severe and nothing that Immodium can't treat.  Ironically, a healthier diet makes it worse!  The fatigue should be minimal - definitely less than I am having now as a result of the radiation treatment.

Unlike chemo, Tarceva will not lower my immune system so there is not an increased chance of infections.  They felt it was still a very good idea to get a flu shot, so I did this while I was at the doctor's office yesterday.  I do need to be careful to wear sunscreen as I will be more sensitive to the sun.

I asked about how the Tarceva works on the cancer cells.  Essentially, it stops the growth of the cancer cells.  Over time, as the cells can no longer divide to grow, they die.  So although Tarceva does not work as aggressively at killing cancer cells as chemotherapy does (which just kills everything - good, bad and ugly), it does ultimately shrink and kill the cancer cells.  Because I have the EGFR mutation, I have a 70-80% likelihood of success with the Tarceva therapy.

In terms of our process going forward, I will see Dr. Bonomi once a month.  On the first month, like on my November 2 visit, it will be just a check in on how I am doing and getting some blood work.  Every two months, starting the first visit I have after Thanksgiving, we will do a CAT scan to see how the cancer mass in my lung is doing and make sure it hasn't spread elsewhere.  We will also do an MRI to check on the brain lesions at that time, but we may not do an MRI every time we do a CAT scan.  As long as they do not see tumor growth, I will likely stay on the Tarceva.

After Dr. Bonomi, Irene and I discussed the fact that my right hand is still very shaky and the steroids don't seem to be helping this, we agreed I should start weaning off of them, cutting the dosage by 2 mg every 3 days until I stop completely after 9 days.  Hopefully, after the inflamation from the radiation has subsided, my right hand will become more steady.  Again, we have to just wait and see.