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Thursday, September 2, 2010

An Encouraging Second Opinion

The Short Version

The meeting with Dr. Bonomi today went very well.  There are some very encouraging options and treatments with minimal side effects that could potentially preserve me well for quite some time.  The Tarceva drug continues to be a strong candidate if I have the right genetic markers - hope to find out very soon the results of that test.  But even if that doesn't work out, there are some chemo drugs that also hold promise and it sounds like they won't dramatically limit my current way of living.

There is a lot to process from our time at Rush with Dr. Bonomi and his team and I am going to take some time to sift through all the information, so for right now I will just leave this short version and get to the longer story at a later time.

The Longer Story

Doug, my brother Rick and I had the second opinion consultation with Dr. Bonomi and other members of the Rush Medical Center staff on Thursday afternoon at 3:00.  The consultation at Dr. Bonomi's office lasted over three hours.  The first hour was a lot of registration and verification of background and insurance.  Then we met with Dr. Bonomi's resident, Rheem Karmali, for quite some time as she provided a lot of the information about our options for treatment.  Next was an introduction to Alison Grupski, a psychologist who wanted to know how each of us was managing through this challenging time and who also spent time explaining all of the integrative therapies and supportive programs available as part of cancer treatment at Rush.  These include access to a dietitian, pain management, yoga, herbal and acupuncture therapy as well as counseling for the patient and all family members.    After that, the meeting with Dr. Bonomi himself and then a larger group meeting with him, his resident, his student and Dr. Krystyna Kiel, one of their radiation oncologists.

The doctors seem to be in agreement that the correct course of action is to have the full brain radiation done first and foremost before anything else.  They are on board with the treatment I am having at Highland Park, although the radiation oncologist thinks it may not fully eliminate the lesions, but just control them.  They would watch the progress of the brain lesions through MRIs several weeks after the radiation is completed and may opt to perform some more focused radiation on the brain for any remaining lesions later, after they have made headway with the lung mass. 

As for the lung mass, if I have the genetic markers for Tarceva, then that clearly seems the way to go.  It is not a chemo drug but works more specifically on certain biological aspects of a genetic mutation that is causing overgrowth of cells and has been found to work on both the lung and brain tumors.  Tarceva is an oral pill taken once a day.  It has had a 60% success response rate and has been used for months and years for some patients.  If over time the response should subside, there is a booster drug called Belvacizumab that can be taken in conjuction with Tarceva to try to keep the response up.  And if that too should become ineffective, then we would move on to some form of chemo or other drugs similar to Tarceva.  (Having the genetic markers for EGFR also improve the effectiveness of chemo drugs for treatment.)  The side effects of Tarceva are much less than with chemo.  Some fatigue, an acne rash that can appear on the scalp, face and upper chest (75% chance of getting that), and possibly diarrhea (50% chance).  There is also a slight chance of appetite loss and thinning of hair.  I'm a pretty likely candidate for the acne rash since I already have a prior history of both adolescent and adult acne, but I can live with this. 

The alternative to Tarceva, if I don't have the necessary genetic markers, is a combination of three chemotherapy drugs - Cisplatin, Carboplation and Alitma.  Using Alimta in this combination instead of Taxol is a newer therapy that is clinical studies right now, but they are finding milder side effects with at least the same level of effectiveness.  The side effects of the chemo would definitely be more substantial than with Tarceva, but since I am young and otherwise pretty healthy, the doctors seem to think I would manage through them without much trouble.  Some possible effects are fatigue, which is cumulative over the length of the treatments, nausea (usually controlled by medication), and potentially a drop in blood counts that would mean I'd have to be careful to avoid infection (3% risk), may get anemic, and/or bruise and bleed easily and maybe be susceptible to nose bleeds.  Alimta can also cause some mouth soreness that they typically treat with folic acid.  The chemo treatment would be an intravenous drip administered once every 3 weeks for four cycles.  After that, I would go on "maintenance" with just the Alimta every four to six weeks.

With both the Tarceva and the chemo options, I would receive CAT scans every three months to see how the therapy is working and whether the tumors are shrinking, growing, spreading or staying the same.  Any time that it would appear that a treatment isn't working, we would evaluate other options.  And it appears there are other chemo combinations available to use if necessary.

There is also the possibility of doing radioscopic surgery on the lung mass to shrink or eliminate it to get it 90% controlled, depending on how it responds to the Tarceva or chemo.  This would involve one to four radiation treatments.  There would be no real side effects to this surgery other than some short-term respiratory symptoms as the tissue heals.

Treatment on the lung mass with Tarceva or chemo would begin 1-2 weeks after the completion of the brain radiation treatements.

There is absolutely a possibility that I could achieve total remission.

5 comments:

Laura said...

Glad to hear that there is some encouraging feedback. Having the right markers would be a boost. Try to have a good weekend - if we are lucky the sun will shine and it will be pleasantly warm.

Tena Russ said...

Great news to hear of encouraging options! I'm rooting for your genetic markers.

K8t said...

With your attitude,DL, total remission will be absolutely possible!

Unknown said...

DL- you GOT this. Remission is immenent! Mom said you had a great chat and she shared her fierce attitude about her cancers. Her illnesses did not have a chance against her attitude and I see the same strength in you. Your attitude is 90% of the battle and it is clear you are on the right track. You've got so many of us rooting for you love. We'll chat soon. Xo. Beej

RNH said...

This is my favorite post--such encouraging news, especially in conjunction w/now knowing you are eligibile for Tarceva. Total remission = ABSOLUTELY! You go, girl ;)