If you'd like to stay informed about the latest GRACE developments, you can subscribe to our free GRACE Notes newsletter. Just fill in the form here and never miss another update!

JimC
Forum moderator

March 18, 2018 at 1:24 am #1294108

song1234
Hello everyone, my father was diagnosed with stage 4 NSCLC with mets to his bones and brain. He was on Tarceva for about 3 months (he felt better within couple of weeks after taking Tarceva) Scans after two months showed “mixed response” pretty much stable disease in his lungs and brain but more growth in his bones. After another biopsy they did not find any T790M mutation but he does have the EGFR(L858R)mutation,his doctor switched him to Tagrisso anyway hoping it would work better for his brain. He had another scan approx 6 weeks after being on Tagrisso and the results are pretty much the same, stable disease in the brain more growth in the bones. After he made the switch to Tagrisso he start feeling a little worst every week, it wasn’t anything dramatic but it’s something that I and other family members can notice, he just seems more tired and the appetite also got worst. It could be the side effects due to the Tagrisso but our main concern is that for some reason the Tagrisso might not be as effective for him as Tarceva. He was very weak and fragile when he first started on Tarceva but was actually able to gained back some weight in the 3 months of taking it but now he is losing weight since taking Tagrisso.

I understand that Tagrisso supposed to work for EGFR patients even without the T790M but I also saw some earlier studies that indicates the response rate in T790M-negative patients is only around 25% which makes this whole thing very confusing, I could be wrong but I think many studies and trials have shown that the first gen TKIs like Tarceva and Iressa have very high response rate in EGFR(exon 19 and 21)patients, something in the 60 to 70% range so my question is does it make any sense for someone to stop Tagrisso and go back to Tarceva if the condition continue to deteriorate and given the fact that he doesn’t have the T790M and was originally responding ok(tho not perfect)to Tarceva? Sorry for the long post, any advice will be greatly appreciated!

March 18, 2018 at 8:04 am #1294110
JimC Forum Moderator
JimC Forum Moderator
Hi song1234,

Welcome to GRACE. I’m sorry to hear that despite the good aspects of your father’s response to therapy (stable disease in the lung and brain), he is feeling worse than when he was taking Tarceva. It’s difficult to say whether that is because of Tagrisso, progressing disease or some other factor. It’s certainly possible to return to Tarceva to see if that is the difference, but that doesn’t address the issue of progression in the bone metastases.

Progression in the bones is a bit difficult to judge, because the presence of the cancer deteriorates the surrounding bone and some of what is seen is that damage. If there are new bone mets, however, that makes it clear that the cancer is progressing. If there is clear progression, then your father’s doctor may wish to change to standard chemotherapy, assuming your father feels well enough to tolerate it. Another option would be to consider radiation to the brain and/or bones, while continuing an EGFR inhibitor.

It’s a complex set of circumstances, requiring a thorough discussion of options with his oncologist. In addition, when a patient is at a significant treatment decision point, a second opinion also can be valuable.

JimC
Forum moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

March 18, 2018 at 9:53 pm #1294115

song1234
Hi JimC, thank you for your quick response. My father’s oncologist did suggested chemo but unfortunately he couldn’t tolerate it after the first(low dose) infusion so chemo is clearly out of the question for now. He did received radiation treatments to the bones but it’s pretty clear that he is having new bone mets after the radiation treatments.

I also brought up the idea about the possibility for the combination of two different EGFR TKI, but his oncologist’s response was they won’t do that outside of a clinical trial and she seems to think even that probably won’t help much other than just adding more toxic to the patient’s body and going back to Tarceva is not going to help either, now this is where I’m not so sure I agree 100% with her. I can totally understand the combination might not work at all, but I just couldn’t agree on giving up something especially someone’s life without even giving it a try. I think his oncologist was acting in good faith and just doesn’t want him to suffer more side effect from those drugs, but I think we really should get a second opinion about this.

Thank you very much for your advice and thoughts

Hello Dr. West and Grace community,

My husband was diagnosed 10 months ago at stage IV (bone and lymph node mets). He was a previously healthy, never-smoker 33-year old. He was negative for targetable mutations but had 80% PD-L1 expression. He was put on the triplet Carbo-Alimta-Keytruda and he's still on Alimta-Keytruda maintenance. He also gets monthly XGeva shots. He has done remarkably well with essentially no active cancer in his body at this time and his lung tumor dissolving into scar tissue.

There is one exception though. His previous PET/CT scan 3 months ago showed a right superior paratracheal lymph node that had jumped a lot in SUV uptake, from 4.6 to 11.3. His oncologist thought it made sense to wait at that point in case it was inflammation caused by Keytruda. He said if it was cancer, it would likely grow. Fast forward 3 months, his latest scan showed that same lymph node did, in fact, grow from 1.2 to 1.9cm and modestly jumped in SUV uptake from 11.3 to 12.7. Everything else is looking great on scan. His oncologist's approach to the 'rogue' lymph node was again watchful waiting. He thinks a 7mm growth in 3 months isn't that significant and he still thinks there is a chance it might resolve with the current treatment. He thinks it's not likely to grow significantly or cause any trouble, so he still wants to wait. He said if it continues to grow, we will consider a mediastinoscopy with biopsy and possibly some local radiation. Since my husband is otherwise doing well, it makes sense to keep him on Keytruda (no objection there). Alimta will probably be dropped sometime in the coming months.

My question is: can we afford to wait at least another 3 months to remove this lymph node? Could this be anything else other than local relapse at this point? He was sick with a virus recently but had been symptom-free for at least a week prior to the scan. And is there still a chance this can resolve by treatment alone?
Thank you for your time and input!

Hello community!
We would like to see what you, our community, would like to see on GRACE.

In this new year, we are planning big things - we will have a booth at ASCO again, and of course will be doing round table videos post ASCO, we hope to to another Targeted Therapies Forum, we have other language videos in the making, and many more irons in the fire.

What information would YOU like to talk about on GRACE? Do you have questions for other patients and caregivers? Would you like to have a conversation about what it is like for you - symptoms, troubles, what has helped you through your journey?

Let us know here -- we want to keep the conversations going!

Denise

Dear All, I wanted to post this to give hope & faith to other members who have been affected by Small Cell Lung Cancer (extensive). This has been a tough journey for my father & my family but one I hope will give people the faith not to give up, I know we are extremely lucky to be in this position as when my Dad was Diagnosed in 2012 we we told his treatment would be palliative care which would not cure him but would treat him & extend his life & make things more comfortable for him, this was devastating news but as a family we remained strong & close & my Dad said he would fight this for us. There have been lots of tears & many sleepless nights. Dad started his chemotherapy which was carboplatin & etoposide, as the cancer had spread outside of his lung to his lymph nodes, he also had radiotherapy, he responded well to treatment although the radiotherapy did make it very difficult for him to swallow & eat & there was periods of uncertainty which caused lots of worry to us, my Dad means the absolute world to me & it broke my heart that I could not do anything to make him better, you feel hopeless & helpless & just want to return to the days when life was easy, my dad never kicked up a fuss about anything & just kept going strong, when you first go to see consultant & hear the amazing news that your father is in remission is just the most amazing news, we live our lives around ct scans, X-rays & bloodtests, this was the new “ normal “ as Dad was in remission they did cranial radiotherapy which is radiotherapy to the brain, this treatment was done as a preventative measure & was hard on Dad & his energy levels but still he carried on being strong & fighting it & each scan & X-ray we got in remission was another blessing ( a real blessing ) now today we have just come out from seeing consultant & Dads CT scan shows no trace of cancer at all!!!

Hi all, my mom had RUL lobectomy in September, 2017 and finally finished adjuvant chemo last week.
At the last meeting with her oncologist, he recommended her to go on a clinical trial for adjuvant Pembrolizumab after resection with standard adjuvant chemo (vs. Placebo).
We're still considering whether she'll be on it or not.

Here is brief information about my mom.
- 59y
- fully resected stageⅡb NSCLC (invasive ademocarcinoma, grade 3)
- completed 4 cycles of adjuvant chemo (NP)
- EGFR mutation - exon 21(L861Q-rare mutation)
- PD-L1 expression 30%

As you can see, she is both EGFR and PD-L1 positive.
It could mean we have more options if the cancer comes back later.
Using Pembrolizumab in advance may prevent recurrence but if it doesn't work well, it might limit our treatment option.
This is why I haven't decided yet.

Could you give me some advice on participating in this trial?
I believe that every single word from all of you will be helpful for me to make a decision.

Thank you for your advice in advance.

Hi everyone. Lurker here. I’m very grateful for the information on this site. I have a question. I was diagnosed in late 2015 with Stage 4 NSCLC due to malignant pleural effusion for which I had talc pleurodesis. I have Exon 21 mutation, was on Tarceva for 10 months, then Afatinib for 12 months. My disease is still confined to my right lung with one small mass in lower right lobe and several small areas Iin the pleural lining. My oncologist is letting me try Tagrisso even though biopsy did not show T790 mutation. First flollow up CT scan was inconclusive so we are doing repeat scan in about a month.

What are my options if scan shows minor progression ? I currently have no symptoms and minor side effects from Tagrisso. Are there any combination therapies which include continued use of a TKI or is chemo the next step? Is TKI plus chemo an option?

My oncologist prefers Cisplatin over Carboplatin. Is there an advantage with Cisplatin? I have read that it is much harsher than Carboplatin. I see my oncologist next week and would like to be more informed before I have a discussion with him. Thanks. <span style="text-align:justify;">

Hi everyone. Lurker here. I’m very grateful for the information on this site. I have a question. I was diagnosed in late 2015 with Stage 4 NSCLC due to malignant pleural effusion for which I had talc pleurodesis. I have Exon 21 mutation, was on Tarceva for 10 months, then Afatinib for 12 months. My disease is still confined to my right lung with one small mass in lower right lobe and several small areas Iin the pleural lining. My oncologist is letting me try Tagrisso even though biopsy did not show T790 mutation. First flollow up CT scan was inconclusive so we are doing repeat scan in about a month.

What are my options if scan shows minor progression ? I currently have no symptoms and minor side effects from Tagrisso. Are there any combination therapies which include continued use of a TKI or is chemo the next step? Is TKI plus chemo an option?

My oncologist prefers Cisplatin over Carboplatin. Is there an advantage with Cisplatin? I have read that it is much harsher than Carboplatin. I see my oncologist next week and would like to be more informed before I have a discussion with him. Thanks.

Don't forget to register tor the upcoming GRACE Forum on Targeted Therapies in Lung Cancer on September 16.

Register here

We look forward to seeing you there or joining us online!

JimC
Forum moderator