This is how it stands with me... - 1257644

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margo
This is how it stands with me... - 1257644

I am staged IIIb lung cancer on Apr 23/12. ( T2 N3M0) mass in Rt lung 4cm.I had concurrent radiation 30x with three round of visitation/prex. Finished Jun 27/12.

8/1/12...CT-improved mediastinal left supraclavicular. And rt hilar. Near complete resolution soft tissue mass in RML.

11/14//12-left supraclavicular lymph is normal limits. 2 normal sized nodes from 2.6 x .8 to 2.3 x .8. Precarinal node from 1.3x 1.1. To 1.0 x .7. Right hilar resolved.

2/18/13- precarinal node .9x1.2. No new soft tissue nodes.

5/20/13-some volume loss due to treatment in right ling
No new nodes
No pleural effusion
No osteomyelitis lesions.

So next appt with PET scan first since 5/12. If clear, onc want to take me off Tarceva. I started Tarceva on 8/15/12...150 mg all the time. Had diarrhea and mild rash. This concerns me, as why he would do so. Please comment on my prognosis and further treatment. Also, any questions that I should ask of him. I feel fine.... Work full time swimming each day....(tho fatigue does set in at times). All along he has said "no surgury". What say you? Should I go for a second opinion?
Thank you Margo

Dr West
Reply To: This is how it stands with me…

Margo,

We can't answer "should" questions, since that's asking for medical advice that we're not legally able to give. It's always reasonable to seek a second opinion when you have questions that you'd like clarified or simply want reassurance that the track you're on is right, or else to learn of some other alternatives. If you learn that the opinion is in agreement, you at least have the reassurance of a confirmation. If the opinion is different, you get another perspective that might provide a new helpful option

Surgery is not standardly recommended for patients with stage IIIB NSCLC, so it's definitely appropriate for that to not be the favored approach.

Similarly, Tarceva is not a standard recommendation after chemo/radiation and has no established role here. Accordingly, I think the question is more why it was pursued than why it is potentially being discontinued.

If you have specific questions, feel free to pose them as follow-up questions, but it will be better to articulate a clear question rather than to just ask for comments from the faculty. Please just make it a specific, closed question and not just a solicitation for medical advice.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

margo
Reply To: This is how it stands with me…

I forgot to say I have the exon 19 mutation.

margo
Reply To: This is how it stands with me…

a Clear question
What would be the reason to stop giving Tarceva to a patient? Besides the obvious of side effects, or progression?

catdander
Reply To: This is how it stands with me…

There aren't medical reasons for stopping tarceva other than significant progression or side effects. There have been issues with paying for the drug however at least in the US the drug manufacturer have helped in that case. May I ask why you ask?
Have you read this? It speaks about about acquired resistance to tarceva, http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/

Dr West
Reply To: This is how it stands with me…

I'd just add that in someone who has an activating EGFR mutation, we'd be extremely reluctant to stop Tarceva (erlotinib) completely, because such patients tend to have such an excellent benefit from Tarceva. Instead, such patients can still benefit from Tarceva at a much reduced dose, one that is tolerable, rather than discarding a potentially very effective treatment just because the standard dose is excessive for some people.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

margo
Reply To: This is how it stands with me…

My onc wants to stop the Tarceva if my Pet is clear. I won't know til Aug appt. had new blood work and everything even creatinine and bilirubin was within normal limits..yeah. BUT my radiologist wanted to check my thyroid and came back high at 8. He said that radiation could cause affects. Won't know what until next week, but have read some interesting topics on lung cancer and thyroid here on cancergrace. I have been taking 2000 vit D3 for the last 6 wks to raise it up. Had a vitamin D test today..results next week also. So, thank you to all, sorry for my testiness....

Dr West
Reply To: This is how it stands with me…

As I'd said in my first reply on this thread, the experience with Tarceva is almost exclusively in people with stage IV NSCLC, where we can't realistically expect that our systemic treatments will kill all of the cancer. Consequently, in that setting, Tarceva is continued indefinitely. In earlier stage disease, where people may be cured, there's no established role for Tarceva, so there's also no clear duration of therapy to pursue.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

margo
Reply To: This is how it stands with me…

Aha, the light has finally come on for me.....stage IV only gets Tarceva......musing to myself.....if I am stage IIIb why am I on it? ...NOT a question. Well, I was screwed when I got cancer, this just makes it worse. Thanks for your help

Dr West
Reply To: This is how it stands with me…

While Tarceva is only well studied for patients with metastatic NSCLC, we know that it's often an extremely effective therapy for patients with an activating EGFR mutation. Because of this, it's extremely tempting to want to give it to people with an EGFR mutation even if they don't have advanced NSCLC. However, in a situation in which people may be cured without Tarceva (such as stage I - III NSCLC), it's never clear whether the cancer is cured (perhaps cured because of the Tarceva, but perhaps would have been cured without it), or whether the cancer is only being suppressed because of the Tarceva. So there's no clear answer to how long to treat when people may be cured even without the Tarceva, in which case it's possible that the Tarceva is just being continued as a superstitious practice.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

margo
Reply To: This is how it stands with me…

Thank you for this last comment...it makes me feel somewhat better....hey, might even be able to go to sleep tonight.

Dr West
Reply To: This is how it stands with me…

The question of whether, how, and for how long to use Tarceva in an earlier stage patient with an EGFR mutation is really an open question. While it doesn't have an established, proven role, it's completely understandable why someone would want to recommend it in that setting, and some experts do advocate that, even if there's definitely nothing close to a consensus on the best way to approach this situation.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education