Symptoms to know the lung cancer patient start to get resistance to Tarceva? - 1273806

ptd0678
Posts:3

My Mom (69 years old) was detected as lung cancer on 31th March 2016. She has a L858R mutation and goes with Tarceva 8 days ago. On the fisrt two days with Tarceva she had headache, felt vomoting (but not vomit). After that the symptoms had gone, she then had mild diarrhea for 3 days. The 6th day with Tarceva she felt pain inside: "like someone try to scrape something on her organs, she said". The symptom last for about 2-3 hours then gone. When the pain had gone, she felt really good and fesh. From the 7th day with Tarceva, my mom does not have any uncomfortable feeling. She look fesh and has good appetite.
We have read some about Tarceva resistance and really worry if my mom has no side effects is mean that it start to resist?
Could you please tell when and which symptoms could help to know tarting time of Tarceva resistance?
Many Thanks,

Forums

catdander
Posts:

Hi Thao,

You don't need to worry about the lack of side effects. That idea is misunderstood by a lot of people. A couple things to think about. Your mom has been on the drug for such a short period of time it's not possible to know what her typical side effect pattern will be. Issues like nausea, diarrhea, and cramping are pretty typical but they also usually come and go. This type of pattern has been seen in people who respond and in those who don't respond to the tarceva.

Another point is some people are extremely sensitive to tarceva for whom the side effects are very bad. These people can take less of the drug and experience less side effects while still responding well to the drug.

Having no side effects doesn't mean someone isn't responding to the drug. Also it's not unusual for people's side effect pattern to change.

The best way to know if someone is responding is wait and see. If your mom experiences new or worsening symptoms she should let her oncology team know. They will be the ones who can make the judgment whether or not to scan early or make changes in treatment.

I hope she does very well for a very long time.
Janine

fightingformymom
Posts: 20

Wow - my mom is 69 also, has the same EFGR mutation (L858R) and was diagnosed on March 17th. We are dealing with exactly the same thing. I am also worried her symptoms are not severe enough, but am trying to be patient and wait for her first scan. We are seeing a new oncologist tomorrow as the current one is not that great.

ptd0678
Posts: 3

Dear Holly,
How is your Mom now?

fightingformymom
Posts: 20

Hi Thao - She is not doing so well. We got confirmation that the Tarceva did not work for her. Unfortunately she also had a serise of strokes a few weeks ago that left her blind and somewhat cognitively impaired. And too weak for chemo. We are trying to get her tested for the T790M mutation but the doctors say it is impossible in the hospital? We are not accepting that answer but regardless it will take some time to get the test done while we fight for that.

How is your mom? I hope much better than mine!

catdander
Posts:

Holly,
Sorry for butting in your conversation but it's what I do. ;) It may very well be your mom is too weak to withstand a biopsy especially depending on where it is. I wonder if they can try a blood biopsy to test for T790 this new test isn't as accurate as the tissue biopsy but very much worth trying if it's the only one she can get. Like any biopsy it's findings if any will be true findings but the lack of findings doesn't mean that it's 100% sure it's not there (false negatives are possible).

Here are some discussions on it, I'd start with the first one, http://cancergrace.org/lung/tag/liquid-biopsy/

Janine

fightingformymom
Posts: 20

Thanks Janine - it's the blood test they won't do. Basically we are being told that the hospital gets a lump sum for her treatment and since here diagnosis at the hospital is stroke, this expensive test will not be covered? The oncology team she is with is not aggressive. I want to know why they can't come in and draw the blood and send it off themselves - they don't need the hospital to do it and it is how they would do it if my mom wasn't in the hospital right? And insurance would cover it I assume since it covered the first test? I even had a nurse tell me today on the phone that doctors don't draw blood............give me a break, I am sure that oncologist could draw blood for this test.

My problem is I work and my Dad is with her - so today I couldn't push the oncologist. But I am trying to not accept this and plan to keep pushing. My mother is BLIND and cognitively impaired from the strokes - she may be in the hospital for many weeks yet!! We can't wait on this test!!

I could go on and on about the horrible care my mother has received the last few months. No wonder the 5 year survival rates are so bad - how can we fight this disease if they (the doctors) are our warriors?

catdander
Posts:

If she is too weak for treatment perhaps the test just isn't needed at the moment. Her new oncologist can help determine if she can be treated with tagrisso before moving forward with a battle to get the test done. If so your cancer center may also have some good ideas. Usually there's a financial adviser who works with patients and family and help get what they need. You might want to speak with the hospital admin perhaps the hospitalist. Keep asking, "how can my mom get the blood test done". Learn as much as you can about how the blood test can help you mom if treatment can be taken.

Janine