Need HELP and honest blunt answer, PLEASE. - 1247840

Kelleylyn129,

I am so sorry for what is happening to your mother. But don't despair. I know the doctors will be on soon but as it is Sunday, I just wanted to give you some comfort.

When you say the cancer metastasised to her abdominal walls, how did you find out? Was a test done on the fluid from the walls or did the CT find some new tumours. I don't know how mets to all these areas were confirmed without a Pet scan and without any other tests.

It may be just my ignorance, but I am at a loss to understand this 'progression' as you call it.

When my husband had progression, he was feeling worse all over and had pain in the bones and stomach area too. When there is progression, our body gives us a clue before any scans can. Is your mother feeling worse than before? Is she having pain?

Even if there is progression, there are still many options available. Dr. West has written excellent posts on second and third line of treatments. Our forum moderators will come along and help you.

Also I am sure they will request you to make a signature so that the doctors can be more informed about your mom's status.

Take care and don't give up.

Hello Kelley, I want add to Apra warm welcome to Grace. I think we will be able to help you understand your mother's situation or at least give you enough understanding so you will be able to communicate better with her doctors.

I understand that many doctors assess their patients with PETs but at this time all standard practices are determined with the information you get from a CT (It is the standard tool used in trials that determine best practices). Many also use bone scans to assess bone. So the CT your mom got along with bone scan possibly gives as much information as she can use. (Primarily, PETs are most commonly used to stage patients before treatment but not assass after treatment has begun)
I wonder if scanning at all so close to the end of so much radiation is a problem at assessing what's what. It is practically impossible to tell infammation from tumor no matter what camera you use. http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…

Kelley, you may be on to something about moving on to another form of treatment. Has she been tested for mutations? It could help point to better options for treatment. This links to a discussion about those who progress through first line treatment.
http://cancergrace.org/lung/2011/02/16/upping-the-ante-in-the-face-of-p…

I will ask a doctor to reply and you should hear back within 12 hours.

I hope this helps,
Janine
forum moderator

I'm sorry but we can't read verbatim reports from doctors. It comes too close to second opinion judgements that our doctors can't legally make nor realistically make due to lack of all the pertinent information.

Right, I competely understand. I think we can do a good job of helping without the report. Reports are difficult enough to understand with the person sitting in front of you but imposible for someone online in this type of setting to understand. So I'll take it down and we will proceed without them.

This is a lot of very difficult information to try to understand if your doctors are less than upfront. Sometimes a nurse who can listen to your concerns can be helpful in your understanding as well as letting the doctors know what you need.

Kelleys,

I don't understand this. EGFR and ALK are mutually exclusive. I believe every oncologist with even a passing knowledge of mutations would know this. Only EGFR negative patients are tested fo ALK and other mutations. If you still have the tissue, believe you should insist on ALK testing or even ROS1, which some people on this site have and are doing very well with Crizotinib.

All the best. Be proactive, fight don't give up. So many avenues are still open :)

Apra is absolutely right. Doctors will often test for EGFR and if that is negative then test for ALK. If ALK is negative then KRAS then ROS1. The order in which the testing is done is that of the possibility of it occuring. Dr. Weiss wrote about his experience with testing,

"I agree that a never smoker with adenocarcinoma who has tested negative for egfr, kras, and alk should consider ROS1 testing if they can afford the test and/or travel for the trial, if positive. While estimates vary for the various mutations, egfr is roughly 15%, kRAS roughly 25 and alk roughly 5%. Further, ROS1 is far more likely in a never smoker–thus far, it’s been found >90% in never smokers, with most of the rest being former/light smokers. So, if ROS1 is 1-2% of adenocarcinoma overall, once you up the odds by being a never smoker and by testing negative for the other mutations, the odds have climbed substantially."

The remaining posts in the thread can be found here and I think worth reading. http://cancergrace.org/topic/ros1-info-for-justtina

Perhaps you can readdress the mutations testing with her doctor.

FYI, EGFR mutation treatment is available I believe most anywhere. The drug for ALK is available in the US and other places but not every where yet. The drug used with ROS1 is the same as for ALK but is probably very limited in prescription and insurance claims and is most often too expensive somewhere around $10,000 a month I believe.

I'd just like to add that it's very odd to compare a CT with a PET. It's usually the same scan being compared. Has she ever gotten a second opinion? I think it was already mentioned, but if this is progession they would not normally continue with the same chemo-they'd do a switch. Wishing her the best. Take care, Judy

Judy you reminded me that I was going to add a link about 2nd opinions. Thanks,
http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/

Kelley,

I'm very sorry about what your mother is going through, as well as your family. Indeed, you're right to ask about the value of subsequent therapy if she has demonstrated clear progression readily, despite chemo/radiation. In someone with such an aggressive cancer, I'm sorry to say that there is truly very little probability that more systemic therapy will be more effective, with the exception of finding a "driver mutation" like an EGFR mutation or ALK rearrangement that are often quite responsive to the EGFR inhibitor Tarceva (erlotinib) or ALK inhibitor XALKORI (crizotinib), respectively.

Folks,

Please be careful about declaring what everyone should do or should know, because some of what you're declaring emphatically is misinformation. In fact, many good doctors test for EGFR and ALK at the same time -- you don't necessarily have to test them sequentially. It takes more time to get the answer and determine a best approach, and while EGFR mutations, KRAS mutations, and ALK rearrangements are generally mutually exclusive, that's not always true. And like so many other things, the more we study a situation, the more our general rules fail to hold up.

Also, I will again say that THERE IS NO EVIDENCE THAT REPEAT PET SCANS TO ASSESS RESPONSE IN METASTATIC LUNG CANCER LEADS TO LIVING ONE DAY LONGER THAN IF YOU DO CT SCANS. PET scans are done for all sorts of reasons, including because both patients and doctors mistakenly believe that the most expensive and newest test must automatically be better, and also that some doctors have a financial incentive for over-ordering them. But there isn't an iota of a scintilla of evidence that PET scans lead to better outcomes for monitoring metastatic lung cancer. They definitely add to cost, though.

-Dr. West

Dr. West,

I think you have at last given the blunt answer that Kelley wants and all of us want.

I am glad that nothing is airtight, sealed with no more room for changes taking place.

I absolutely agree about the pet scan too.

Thank you