New painful lymph node shortly after starting Tarceva - - 1273779

fightingformymom
Posts:20

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.

Would you consider this new lymph node troubling and indicative that the Tarceva is not working or does it seem to be more likely from something else. She says it hurts quite a bit especially when she bends over. It came on pretty fast. I'm wondering if it's possibly from the drainage she is experiencing....

Just looking for some thoughts or insight. Thank you!

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Reply # - April 26, 2016, 09:30 AM

fightingformymom
Posts: 20

I also want to add that her bloodwork since starting tarceva is really good - and labs that were abnormal have normalized.

Reply # - April 26, 2016, 12:07 PM

catdander
Posts:

Hi,

This could be from something unrelated to cancer or the new treatment, and yes this could be worrisome for progressing cancer. She should contact her oncologist to let them know of the new symptoms as she always should. It's a good sign that some cancerous lymph nodes have dissipated.

I hope it's nothing.
Janine

Reply # - April 28, 2016, 01:46 PM

fightingformymom
Posts: 20

Thanks Janine - they are aware of it and basically are saying we can't tell anything so soon after starting Tarceva. After some talk with her today, the pain in the node is better (so it's not painful) and it's hard and won't move. I'm by far an expert, but based on what I've read, it sounds like a cancerous node. However, I do go back and read her reports from Mayo and they do reference nodes in her neck so it may just be that the node got worse after she went there and the Tarceva hasn't impacted it yes. It was less than a week after starting that she noticed it.

Anyone have history or insight on how long it would take for Tarceva to work on lymph nodes? I would guess that just because it hasn't worked in 2.5 weeks doesn't mean it won't work eventually?

Her blood work is great they say and they are very pleased with what it is indicating.

Reply # - April 29, 2016, 07:59 AM

catdander
Posts:

I wouldn't worry too much about how the node feels and I wouldn't assume tarceva isn't working just 2.5 weeks into treatment. Give it time. As long as your mother isn't experiencing any new or worsening symptoms not typically associated with tarcava she should be given the time her oncologist suggest before her next scan.

If she is being seen at Mayo even more reason not to worry about her care. They are among the tops.

All best,
Janine

Reply # - May 4, 2016, 08:11 AM

fightingformymom
Posts: 20

My mom went to a new onocologist yesterday who had her go to the hospital for an ultrasound which confirmed the lump is a node and it is the cancer in the node.

Given my mom has almost no rash, her cough is not getting better and this node is painful and not going down, my gut is telling me the Tarceva is not working. It's been 3 and a half weeks now.

Can a doctor here give an opinon on this? I would really, really appreciate it.

Thank you!

Reply # - May 4, 2016, 02:31 PM

catdander
Posts:

Hi Holly,

I'm so sorry you mom isn't better. I've ask a faculty to give input on your thread. As I'm sure you understand it's not possible to give an opinion such as could be given by an oncologist who has all the information. Sometimes it's the semantics that can get us into trouble.

I hope your mom finds efficacy in treatment soon.

All best,
Janine

Reply # - May 4, 2016, 10:09 PM

Dr Laskin
Posts: 34

Dear Holly

I can understand your worry - we all hope that when someone starts a promising targeted therapy like Tarceva and they have the sensitivity mutation that all of the disease will quickly melt away - and sometimes that really does happen. But for a lot of people there is some fluctuation, and with a node it's hard to tell. It is somewhat unusual for a new node to grow while other nodes are shrinking - certainly one interpretation is that the drug is only working in some parts of the cancer and not in others. but again, it could be that there are other reasons for growth - for example sometimes the cancer dies quickly and the centre of the node becomes filled with pus or fluid.

In general, if someone is going to have a response to Tarceva it is seen within the first 6 weeks or so. I definitely understand your concerns and it is true that it is one possibility that this is an area of cancer that is resistant to the Tarceva - but it's also a bit too early to give up on what should be (at least statistically speaking because of her mutation) a very effective treatment.

Before giving up the Tarceva i would want more imaging evidence of progression - especially in her primary cancer. i'm sure the oncologist has a CT planned for the next few weeks, if not you might want to find out when one is planned especially with this node changing. Once you have more information - if the cancer is truly growing on CT - then you might indeed need to give it up. until then there's still room to hope that it's working.

BTW - it's true that having a rash can be correlated to a response; but the lack of a rash does not mean no response.

hope that helps

Dr Laskin

Reply # - May 5, 2016, 06:14 AM

fightingformymom
Posts: 20

Thank you Dr. Laskin for your kind and generous response. I really, really appreciate it. The initial PET scan did note nodes in her neck so I am wondering now if this node was already impacted by the cancer before she started the Tarceva. The PET scan was read at Mayo and she is now seeing a new oncologist in the Detroit area so the new doctor may not have made that connection. Wishful thinking but a possibility I guess.

I was a little surprised that they said the ultrasound on Tuesday showed that the node was cancerous - I didn't realize you could tell from just an ultrasound?

Regardless - the oncologist wanted to wait three months for the first post - Tarceva scan but we are going to push to have it done at 6 weeks to 2 months. I think it is important we see if it is working or not.

Thank you once again.

Reply # - May 6, 2016, 04:30 PM

Dr Laskin
Posts: 34

Dear Holly

i'm glad that was helpful. It's true an ultrasound cannot really 100% diagnosis a cancer in a node, but they look for common patterns and make reasonable assumptions. They can tell if something looks more like a fluid filled cyst versus a more solid cancer, for example. In reality, i wouldn't get too focused on that specific node, the Tarceva goes everywhere so if it's cancer and if it's sensitive then it will work.

The scan at 2 versus 3 months is really an individualized thing. If i can see that a patient is clearly deriving a benefit, they feel better or a node is shrinking that i can feel, then i often leave the scan a little longer. But if i'm not sure if there's a response i do it more like 8 weeks or so. I had said 6 because i think you were asking at what point should someone have responded by, so 6 weeks is probably the earliest. Anyway, you can negotiate timing with your oncologist.

Best of luck

JL

Reply # - May 9, 2016, 07:07 AM

fightingformymom
Posts: 20

Thank you Dr. Laskin for your response. It is very, very appreciated!

I am very happy to report that when I saw my mom this weekend, the node looked like it had declined some. I mentioned it to her and when she looked at it closely agreed that is has gone down. Saturday was four weeks of Tarceva so hoping this is good news!

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