I Am Not Sure that My Doctor is Invested in My Care - 1261059

survivor5940
Posts:1

Hi, I am 59 yo woman who was dx with lung cancer. I was considered a non-smoker, had not smoked for 19-years, traveled to Mexico in 2007. Mt pulmonologist ordered PFTs, bronchoscope and followed with a CAT scan guided wire bx which tested positive for EGFR mutation. I requested a PET scan after he recommended a lobectomy bc I was sure the pain in my hip was bone metastasis and it was. The mediastinal lymph node is also involved and presents itself with feelings of CAT indigestion and pressure near the heart.

The course of treatment then changed. I was not a candidate for surgery. I was started on Tarceva 150 mg and experienced a violent rash, dehydration, dryness, loss of appetite, fatigue, but I stuck with it for 6-weeks and it paid off. The CAT revealed a 40% shrinkage, oncologist decreased the dose from 150mg-100mg for the next 6-weeks and I agreed, but the next scan showed no more shrinkage.

He reported on last Thursday that this was good since the tumor is stable, but he also reported that there were additional small tumors noted in the right middle lobe (initial tumor size was 2.6cm). I was so ill e during my appointment, I did not think of all of the questions that I needed to ask him).

I realized, too, that prior to the appointment,I knew the tumor is active. My body temperature is up, again, night sweats, et c.

So, I am at a loss that he would say that it is not active when my body is saying that it is. I have called and scheduled another followup .

I disagreed with his suggestion to continue with the same dose 100mg and asked to alternate 100-150mg doses and he has agreed to do so.

My questions are: could it be that I have become resistant to Tarceva? Is surgery ever appropriate? What would be the next line of defense. Is there a tx plan to use chemo in addition to Target drugs and how does this impact my choices in treatments with changing treatment plans.

Forums

Dr West
Posts: 4735

Your question is a common one, so we have provided an answer in our FAQ section:

http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/

There is no correct answer to guide a "best approach" here, though the link and the collection of additional links after that post describe many of the key issues. You may also want to do a search for the tern "acquired resistance" on the site. Unfortunately, we typically see the onset of "acquired resistance" -- a gradual loss of sensitivity to a previously effective therapy -- several months or sometimes up to a few years after an initial good response as a nearly inevitable development.

Please feel free to ask any follow-up questions on this issue after you've reviewed this information. Just remember that we can't provide medical recommendations of how to proceed, and there really aren't any clear right answers to how to proceed in this situation.

Good luck.

-Dr. West