CEA

[Cardinal1111]

Hello

So my wife had 6 rounds of chemo and physically it seems to be working breathing is better cough subsided, energy level increased, mobility much better. It did take a physical and emotional toll. She was taking treatments 3 weeks on 1 week off to keep white counts up.

Yesterday we found out it didn’t impact her CEA number. X ray shows there isn’t any growth in tumor.

So doc wants to stop the chemo because of the lack of change in CEA. He wants to attempt a new drug, I’m not sure what this is?

He is not in favor of doing a bio marker check. He feels knowing she has EFGR marker is all that is needed and he is going after that. He has indicated that he creatine level is low and her O2 level will prevent most trial drugs due to protocol.

I’ve gently asked my wife to request a consultation with UT Southwestern. ( we are in DFW area)

Any thoughts on CEA level not changing but she is feeling better. Since stopping chemo cough has slowly increased.

Thoughts on how to gently convince wife to speak with UT Southwestern for consultation?

She has developed relationship with current oncologist. She is stage IV and been with him for 5yrs.

Background of treatment Tarcivo for 2 plus years tagrisso for 2 plus tears... both have lost effectiveness. Plural effusion Jan-March

As with most first oncologist was a nightmare.

Peace

Bill

[Denzie Moderator Volunteer]

Why did the doctor do an X-ray rather than a CT? You get more detail in a CT. Most chemotherapy regimens are 4–6 treatments followed by maintenance therapy. What chemo protocol has she been on?

My gut reaction is ‘If it ain’t broke don’t fix it’. No change in CEA means that this is stable. If she’s feeling better and has more energy it has worked on some level. Many doctors do not use CEA to make treatment decisions.

If her doctor is truly fighting for her survival he will not feel threatened by her getting that second opinion. Getting a second opinion may reinforce the faith she has in her doctor and your trust as well.

[Cardinal1111 in reply to Denzie]

The CEA number increased when the tagrisso stopped working. I guess he expected the CEA to go down. What I don’t know if it went up

[Denzie Moderator Volunteer in reply to Cardinal1111]

That’s an important piece of information you have to have to help this decision process then. Still, I would ask your wife to have a second opinion so you, as the caregiver/spouse, can feel comfortable knowing that you are doing everything you can to support her.

[Cardinal1111 in reply to Denzie]

We just got word that with the chemo the CEA increased dramatically.. her Oncologist is putting her in as a candidate for antibody treatment.. he describes this as “ cutting edge technology” ... we are waiting on a phone call to set up the appointment.. It appears as there is an interview and approval process for this type of treatment

[Denzie Moderator Volunteer in reply to Cardinal1111]

Excellent choice. Monoclonal antibodies have been a big game changer in the cancer world. Will this be an established treatment or will they be looking at a clinical trial? Do you know which drug?

Sending hope that this Succeeds for her for a very long time.

[Cardinal1111]

I don’t have any other details. We were supposed to get a call to set up the appointment for the interview but did not hear from them. I hope to find out more tomorrow.

[JanetteR57]

If she has EGFR mutation there are now many more agents available than a few years ago and new ones being developed in clinical trials all the time hence the oncologist saying this may be enough - if there is a known target in the cancer, this often offers the best hope of targeting a treatment at it that is evidenced to work. There are so many different types of mutations and markers in lung cancer and as EGFR is one of the most known about, it also has much more history in being treated. Targeted therapies were the 'treatment of choice' a few years ago before immunotherapy came along - now many patients are given this up front to see if their own immune system can mount a response... combinations of treatments also are often delivered in different times/regimes and many have been affected by changes in pathway due to covid 19 in UK and Europe so I'm assuming in the US too. It is common for patients to become resistant to targeted therapies which is why new ones are being developed all the time and most pharmaceutical companies have some treatments for such targets in their portfolio. He as would be expected is using her specific clinical situation (such as low oxygen level and creatine levels) to inform you that with such measurements she may be excluded from some treatments and trials so for me, is responsible in using her own clinical situation to determine the treatment. If she has a trusted relationship with her oncologist that is important so perhaps the way to communicate it will be important not to jeopardise/damage it which may be what she fears..... talk to her and ask her if that is what is bothering her. for many who've had a less than successful first oncologist, finding somebody they trust is very important.... as others have said, clinicians shouldn't see it as an affront but it depends on how it's communicated. . hope whatever you decide she starts on some effective treatment when required. in the meantime, sounds good if its stable... good luck .

[Cardinal1111 in reply to JanetteR57]

Thank you to everyone who replied

We are waiting on insurance approval for my wife’s next treatment ( antibody). So far none of her treatment options have been declined. For some reason this one seems to be taking longer.

If for some reason this is declined, do we have options?

Also how often should she receive a CT scan? Our doctor normally does X-ray to keep an eye on the main tumor.

Thanks to everyone for this wonderful source full of caring people.

[JanetteR57]

In the UK chest x-ray is the usual imaging tool as many of our CT scanners deliver a high dose rather than low dose scan - now being invested in by some centres for lung screening but CT is used to follow up if abnormal Chest x-ray or other symptoms warrant it. However having radiation whether for treatment or scans too frequently isn't good for those with a cancer history so just demanding/paying for them for peace of mind can also come with risks. Her options will likely depend on the results of her various tests - if one centre says she has no biomarkers/mutations that currently have specific treatments, it's unlikely another will say different unless there are clinical trials she could take part in. At the moment some LC pathways have changed due to covid 19 so for instance in the UK patients are being offered immunotherapy even if their PDL1 levels would not usually warrant being treated in this way - so their outcome/response will be largely unknown and unable to be predicted as the former treatment/trials were only for patients with specific rates of this protein. sorry to sound vague - but what would usually be on offer may be impacted due to pandemic - worth asking her consultant what other avenues might be possible - but for now, wait and see - the time may be being sensibly used to discuss her case with the multidiscipline team to explore available options. good luck.

[Cardinal1111]

Update..

Had consultation on trial treatment

The oncologist wants my wife to be part of a trial using Enfortumab Vedotin for treatment of her lung cancer

She will get another biopsy, last one was her initial which was 5 yrs ago, she will get updated CT scan prior to biopsy and the bio marker test.

The main thing that could prevent her from being selected is lack of O2 and the ability to show she can increase her mobility. She currently struggles with “ long walks” and any exertion. So we are going to work on some physical therapy and her lung capacity to see if this will help.

Doc feels that being confined to home during Covid and right after having pluerex tubes in each lungs resulted in her losing some lung capacity.

So light exercises and this breathing equipment to get her prepared for her next journey.

If you have any information on this trial please let me know. Any other thoughts, advice, words of wisdom are greatly appreciated.

Thanks