Iressa - taken off of it after 6 weeks - why would they do that? - 1261346

It sounds like you need to get a clear explanation. Personally, I wouldn't take a patient off a treatment before telling them why.

-Dr. West

Did you do Iressa 1.5 years ago after chemo? What stage are you? It's possible that you're no longer EGFR positive. But only your doctor can give you that answer on Wednesday. Good luck! Judy

Also, if you have already been on the pill for 6 weeks, it may be reasonable to check a CT scan to see if the pill has had any effect, before changing treatments.

I look forward to hearing about your appointment. You may already do this, many of us do, make notes of your questions before the appointment and make notes during the appointment. I've even recorded one during an appointment with a surgeon, his suggestion. Another thing people do is take someone else with them to the appointment so there are 2 more ears listening.

During discussions here it's possible to get more specific answers if you can tell us whether your treatment is curative or palliative and what treatments you've had. Sometimes it's not possible to eradicate a T3 tumor but are able to stabilize it.

I hope I've not overstep my bounds.
All best,
Janine

Not seeing the scan, it's not possible to assess the significance of the progression. I'd say it's not true that you necessarily need 3 months to determine whether there is a response or progression, so I suspect that the scan led your oncologist to believe that more time would lead to more progression. If there's a potentially better alternative, it is likely very sensible to cut your losses and move on to something else. You're right that sometimes you could interpret that progression may be slower on an EGFR inhibitor than off of it, but that's definitely a difficult judgment call in most cases.

Good luck. I hope you get answers that make sense to you very soon.

-Dr. West

In general, it is true that usually Exon 20 mutations do not have robust responses to Iressa/Tarceva compared to Exon 19 or 21. However, it is helpful to know the exact Exon 20 mutation before making any conclusions about whether Iressa/Tarceva will work. Dr Maria Arcila has a good article on this for clinicians: http://mct.aacrjournals.org/content/12/2/220.short. There is available case data to support using Iressa/Tarceva or Gilotrif in certain Exon 20 mutations, it depends on the specific mutation. Often one has to dig through the published literature for it.

Certainly, most of us have found it helpful from time to time to share articles or research data with oncologists especially when the explanations are over our head.

As patients and caregivers become more involved with decisions so do doctors become more comfortable with this type of exchange. So yes, a little extra tact is helpful. Many doctors aren't up to speed with the new strategies of patient/doctor collaboration. Dr. West and other doctors on Grace have talked about the overwhelming amount of new information that makes keeping up with all the different cancers and their new data too much for one person to keep up with. They have come to welcome patient/family input. It's the very reason Grace exists.

However there are doctors and patients who are used to the old ways where the doctor asks all the questions and gives only the info that is absolutely necessary. Maybe I've helped my husband's doctor feel more comfortable with my questions and info. I don't know if I've mentioned this but note taking is really helpful when you've got a lot of questions or info to talk about. Making a copy of something you want the doctor to read is a good idea. It's a relationship issue that I hope you can forge in the direction you need.

Good luck and maybe others will have some tips as well.

Janine

BTW, quite lovely pic. :)

Ann, It's great you've got that extra pair of ears. I'm not sure you should spend too much time trying to get someone to admit there's something about their job they don't know; unless they're one of our faculty. Some would fight back and get you no where. I don't know if "kissing up" is slang used in UK but means let your doctors think they know everything if that's what gets you what you want and that's to listen to you. You got to pick you battles carefully.

This issue of how to press for either an approach you feel is right or at least a more thorough discussion is a tricky one. I know that many doctors are not always welcoming of information from patients, and I think it's a vestige of a time when it was expected that doctors would have all of the answers and patients just didn't have access to reliable, current information. Today, there is so much information that it's impossible for any one person to keep up with everything in lung cancer, let alone the developments in rare EGFR mutations, and a patient often can dedicate far more time and effort to obtaining detailed information about a narrow clinical situation.

I hope we evolve to a situation in which doctors and patients can come to a point in which it's understood that doctors can't know everything out there about their problem, yet can still be a very good doctor; ideally, the relationship will move from one in which patients are recipients of whatever insight a doctor can offer to a bidirectional or networked one in which a patient and doctor are a team, ideally along with all of the knowledgeable people providing information online. You pool together what you learn and develop a plan together.

I'll parenthetically say that even though I have a significant focus in lung cancer, there are many things I've learned from very knowledgeable patients and caregivers who provide links or their personal stories, as well as sometimes suggestions from my own patients. It will take time for everyone to become acclimated to new roles, but I don't think it's feasible to rely on any single person knowing everything there is to know about a person's cancer.

Finally, I'll say that I have seen some responders, at least patients with modest benefit, among those with an exon 20 mutation who have received an EGFR inhibitor.

Good luck.

-Dr. West

Dr. West wrote a post about RFA a type of hyperthermia therapy sometimes used in solid tumors within the body, "It is a local therapy, which means that it works for a specific tumor area, the same concept applying to surgery and most radiation techniques."

He goes on to say, "RFA doesn’t have any established role or anticipated survival benefit for multifocal, advanced lung cancer, where new lesions can readily occur in short order after treating one or a few tumors with RFA. It’s generally been used for debilitated patients who are not candidates for surgery but have early stage lung cancer. The problem is that this is the setting in which most people would recommend and pursue radiation therapy, and there are not many situations in which radiation is not possible but RFA is an appropriate option." http://cancergrace.org/lung/2007/03/06/rfa-for-lung-tumors/

The first question might be is this treatment for a cure, if so would surgery or radiation be a better fit.
Here is a post about what is known as a precocious metastasis where there is just one met that may be treated locally. http://cancergrace.org/cancer-101/2012/04/06/broadening-precocious-met/

Janine

I think you're asking about just heating up the entire body, as in just being in a hot place? I have never heard of that being suggested by any oncologist I know of, and I know of no evidence that it is beneficial. I must confess that it's difficult for me to envision how this would be helpful.

-Dr. West

Hi Ann,

Plenty of ways to think through this. What your doctor may be thinking is that perhaps you need a 4 week cycle for your neutrophils to rebound, and that getting a full dose every 4 weeks may be a bit better than a lower dose every 3 weeks. Plus, the effects of chemo can be a bit cumulative, so she may be thinking that chemo every 3 weeks may not work for you even with Neulasta. The goal is to be able to get the chemo you need, not to stay on a prescribed schedule that doesn't work for everyone.

JimC
Forum moderator

We commonly add Neulasta, but it's only intended to be given once per cycle. It's a shot that costs about $9000 and takes about a week to work, so you definitely wouldn't do it twice, nor would you expect a quick response.

Cutting the dose or delaying next treatment are all options to serve the same purpose. There really isn't a clear answer of one being better than another.

Good luck.

-Dr. West