Does this mean we should move on from Tarceva? - 1274098

fightingformymom
Posts:20

I posted a few weeks ago about my mom - Here is what I wrote -

Hello – my mother (69 – stage IV NSCLC – EFGR + L858R) started tarceva a little over 2 weeks ago. It is her first treatment after being diagnosed in late March. Shortly after starting her cough has gotten much worse (it is a wet cough) and she developed a new, painful lymph node in her neck. The lymph node that led to her diagnosis in the same area has gown down since starting tarceva.

About a week after I wrote this, my mom had to go to the hospital because her heart was in a-fib. At the hospital they did a CT scan. The scan says "some of the hilar lymph nodes are having mass effect and narrowing the adjoining pulmonary aterial tree". In the hospital her heart checked out fine - no issues there and she was told that the cancer caused the a-fib.

Complicating my mom's care is the fact her oncologist is in the greater Detroit area but she lives about 2 hours north so the hospital she went to was where her oncologist is affiliated with. So after she got out of the hospital, I took the CT scan to her oncologist and she said she would have a radiologist read her original scan and her new scan to compare. I was worried because the new scan said her tumor was 3.6 cm and the orginal report said 3.2 cm

Her original scan was March 15 and this scan was May 6 - approximately 6 weeks. At the time of the second scan, she had been on Tarceva 4 weeks. Also note that the scans were done on two different machines.

The oncologist called me yesterday and said that radiologist that read the reports feels my mom is stable but she did say there was a "millimeter or two here and there". We have an appointment next week to see the oncologist.

So here are my questions - would this indicate that the Tarceva is not working well enough for my mom? I'm not sure if the fact her 2 CT scans were on different machines could mean a slight change in size is irrelevant? The oncologist she sees is nice but I'm not sure

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fightingformymom
Posts: 20

I'm not sure she wants to fight for my mom.

Also, today I talked to my mom and her heart rate is high again - I'm worried that the nodes are pushing again and causing her to go back to a-fib. Another indicator that Tarceva is not working?

I've read so many stories about people who respond, respond really well right away. And I don't feel I'm seeing that in my mom. Also very worried about continued a-fib. Is four weeks to soon to tell??

Thank you for any insight you can provide!

wadvocator
Posts: 79

Holly,

Just want to share an experience when my wife started Tarceva. She enrolled in a clinical study that combined Tarceva with another study drug in a double blind study. The study was stopped. It ended up she had the placebo as the study drug so the side effects she experienced were likely due to Tarceva. Below is the experience:

During the first three weeks of taking Tarceva, she complained, numerous times, about the feeling that her heart is beating really fast as though the heart wants to jump out of her throat. In one instance, we ended up taking her to the emergency room. All of the emergency room tests revealed nothing unusual except that she was really dehydrated. They infused her with two IV bags. The next day, we visited our oncologist at SCCA and the decision was to stop tarceva for a week to see if same symptom appear. The symptom stopped and we learned the importance of hydration when taking Tarceva for my wife. A week later we restarted Tarceva and she drank lots of liquid. The whole experience was really intimidating! To ensure lots of liquid consumption, we bought bottle water and numbered the bottles. That symptom never returned and she was on Tarceva for 4.5 years before switching to Tagrisso. Even today, I make sure she drinks lots of liquid.

fightingformymom
Posts: 20

Thank you so much for your response. I just sent a message to my mom to make sure she is drinking a lot of water! Good tip and definitely worth trying.

wadvocator
Posts: 79

I don't know if your mom has EGFR del 19 type of mutation which my wife has. I read somewhere that Tarceva tends to have longer effectiveness duration for such type.

JimC
Posts: 2753

Hi Holly,

Each patient responds differently, even to a targeted treatment.such as Tarceva. Some patients have quick, dramatic shrinkage, while others have less impressive shrinkage or stability. Some in the first group, despite the rapid shrinkage, don't have a long-lasting response, while a number of the latter group have a response that lasts much longer. And there is a small percentage who, despite an activating EGFR mutation, don't respond at all.

The small difference in the tumor size from one scan to the next is probably not significant, especially considering the use of two different CT machines. The images, even from the same machine, will "cut" a bit differently since the angle is not precisely the same, and since primary tumors don't tend to be spherical, radiologists may use different point at which to measure the longest dimension of the tumor.

Taking all of that into account, I think it's too soon to presume that Tarceva has not been effective, and helpful to remember that stability is a good response to stage IV lung cancer treatment.

JimC
Forum moderator

wadvocator
Posts: 79

Another piece of data that might be useful to you Holly.

I learned the usefulness of doing CT scans over time is to compare the scans for growth or stop of growth. There is definitely small discrepancies in the comparison depending on how each CT reader measured a none even view. The reader usually provides a two dimensions read and our oncologist was not concerned with millimeter read differences such as 1.2 cm vs. 1.4 cm and would be concerned with 1cm vs. 2 cm. When discrepancies between each reading are in mm, one needs future readings and comparisons to jump to conclusion that the treatment is not working. When my wife had what appeared to be spot progression in mm, our oncologist and us decided to keep eyes on it for 3 additional CT scans and 4 months before concluding spot progression. Each successive reading measurement differs in mm.

JimC
Posts: 2753

Hi Holly,

I think that's an important point that wadvocator makes. We like to think of cancer treatment as a marathon, rather than a sprint, and trying to stamp out any small sign of progression doesn't help to achieve that. As Dr. West has said:

"It’s not rare to have a situation in which our interval scans show a relatively minor change that you need to squint to see, but it may well lead us to overreact and make a change, because we’re predisposed to action, even when it’s just like changing lanes in a traffic jam and doesn’t get you anywhere any faster." - http://cancergrace.org/cancer-101/2012/08/29/treat-the-patient-not-the-…

We like to get the maximum benefit from each line of therapy, so it's preferable to avoid making changes in treatment until progression is significant and the change is necessary.

JimC
Forum moderator

fightingformymom
Posts: 20

That helps so much - thank you Jim and Wadvocator. Of course we want to ride Tarceva as long as we can, and knowing stable scans and very tiny changes scan to scan are ok helps. Of course we need to talk to the oncologist and will on Friday. But this makes me more comfortable with her suggesting we stay on the Tarceva. I just worry about the a-fib and really wish we could see some shrinkage of the nodes in the chest. Maybe that will still come.

Thanks again for the response.

carrigallen
Posts: 194

Based on the description above, it seems prudent to try the Tarceva for a while longer. It is ok to reduce the dose of the Tarceva if side effects occur. Often older patients require dose reductions of Tarceva. The afib could be a side effect of the Tarceva. It may not necessarily be related to the lymph node.

fightingformymom
Posts: 20

Thank you Dr. Creelan - we will talk to the oncologist on Friday about the a-fib being a side effect of Tarceva.

I appreciate all your input very much!