My mother 75yo, 5'2" 100lbs, non-smoker, non-alcohol, Asian, recently diagnosed with stage IV lung cancer Oct 2014. Has EGFR mutation. Difficulty breathing low energy. Lung and bone metastasis. She has been submitted to participate in TIGER-1 clinical trial to receive either Rociletinib or Terceva under randomization. No previous chemo, EGFR inhibitors.
Previous cancer: removed ovarian early 90's, removed cyst on kidney mid late 90's, thymoma in 2001 removed hypothalamus. Has arrhythmia, irregular heartbeat due to a faulty heart valve not sure atria or ventricular.
First treatment is tomorrow. Brain MRI shows no metastasis, PET scans show no other metastasis in other organs besides lung and certain bone sections (not sure which). Has been prescribed Zometa.
Medication: something for thyroid not sure what.
How long does my mother have to live? What is a probable progression scenario? What can I do to prepare my 79yo father? I know it "depends" and "no way to know for sure" qualifications. I live in Oregon. My sister lives in NY. My parents living together are in So Cal. We just found out a few weeks ago.
Reply # - November 25, 2014, 02:40 PM
I'm so sorry to hear of your
I'm so sorry to hear of your mother's diagnosis. It certainly sounds as though she is quite a fighter, and that is in her favor.
As you realize, no one can say how long she has to live. The median survival for Stage IV lung cancer is 10-12 months; of course that means that half of those patients live longer, at times much longer. Her EGFR mutation can improve those statistics if she responds well to an EGFR inhibitor.
The major factors which will determine how well she does include the biology of the cancer - how aggressive it is and how well it responds to treatment. If it responds well to the initial treatment, that may give you an indication that she will better the median results. The saying is "responders respond" so even when one regimen becomes ineffective, such patients are more likely to get a benefit from the next one. If you look at the signatures of GRACE members who have responded well to first-line treatment (including EGFR inhibitors), you will find numerous examples of patients who have survived for several years (including my wife, who had an EGFR mutation and battled stage IV lung cancer for three years and four months).
The likely places for lung cancer to progress, in addition to growth of the existing tumors in the lung and bones, is metastases to the brain, liver and adrenal glands.
Good luck with the trial.
JimC
Forum moderator
Reply # - November 25, 2014, 11:17 PM
I'm also very sorry about her
I'm also very sorry about her diagnosis. The evidence from trials over the past few years shows that patients with an activating EGFR mutation have a median survival of about 24-32 months, and that's without the benefit of third generation EGFR inhibitors like rociletinib and AZD9291, as well as immunotherapies that we expect to become available in the next year or two. These options may well improve survival further.
Good luck.
-Dr. West
Reply # - November 26, 2014, 03:12 PM
Dr West and JimC;
Dr West and JimC;
Thank you for your response and sympathies.
Today, my mother received her first lung cancer treatment. She was randomized to receive Tarceva on TIGER-1 trial instead of CO-1686. She can cross over to CO-1686 Rociletinib if she develops T790M resistance or if Tarceva doesn't work.
We were hoping she would randomize to receive CO-1686 from the outset. She has not developed T790M since this is her first treatment of any kind.
My question is whether the scenario of single-arm CO-1686 first line is better than the alternate scenario where Tarceva is first line and then crossing over to CO-1686 after T790M is revealed. Isn't it true that second line is reduced efficacy? If my mother was to develop T790M, wouldn't it have been better to start with CO-1686 from the get-go? Or, does it not matter if my mother doesn't have T790M?
I appreciate any opinions.
Thanks,
Allen
Reply # - November 26, 2014, 04:34 PM
Hi Allen,
Hi Allen,
When you say that "second line is reduced efficacy" I think what you're referring to is the fact that second line treatment, no matter what the order it's received, is generally less effective than first line. The major exception to this happens when a patient who has an activating EGFR mutation or ALK rearrangement (especially when it is discovered after chemo is begun) does not respond as well to first line chemo as they do to subsequent targeted therapy. Otherwise, in general each subsequent line of therapy produces diminishing results, although there are always exceptions in which a patient will bounce from one regimen to another, continuing to get good responses from each. Unfortunately this is all too rare.
One of the questions your mother's trial may answer is the one you've posed: Is it better to bypass Tarceva and go straight to an agent you expect to be effective even in the case of T790M mutations, rather than waiting for that resistant mutation to develop? Usually, we consider lung cancer treatment to be a long distance run rather than a sprint, so we like to preserve as many options as possible so they can be used later. It's not all that clear whether Tarceva would work if CO-1686 becomes ineffective, while it makes sense to follow Tarceva with CO-1686 if T790M resistance appears.
Good luck with Tarceva.
JimC
Forum moderator
Reply # - November 26, 2014, 07:11 PM
The purpose of this
The purpose of this randomized trial is to determine whether initial rociletinib is better than starting with Tarceva (erlotinib) and then moving on to rociletinib after that if the cancer then has a T790M mutation. The reason the trial randomizes people to one approach vs. another is that we don't know which is better. However, it's wrong to assume that the new treatment is invariably going to be better than the current standard.
For instance, it may well be that even if patients receiving first line rociletinib do go 3-6 months longer before progression than patients on Tarceva, but then if patients who received Tarceva can then go on to benefit from rociletinib for another 9-12 months or more, but patients on first line rociletinib have no other EGFR-based treatments to consider, the patients receiving first line Tarceva may end up doing better in the long run. The goal isn't just to do well with your first treatment, but more importantly to do as ell as possible over the entire course of treatments that can help a patient.
Again, we don't know that rociletinib as first treatment is better than Tarceva as first treatment. If we did, we wouldn't need to do the trial; however, it would be wrong to assume that rociletinib is clearly the best first line treatment.
Good luck.
-Dr. West
Reply # - November 26, 2014, 07:11 PM
The purpose of this
The purpose of this randomized trial is to determine whether initial rociletinib is better than starting with Tarceva (erlotinib) and then moving on to rociletinib after that if the cancer then has a T790M mutation. The reason the trial randomizes people to one approach vs. another is that we don't know which is better. However, it's wrong to assume that the new treatment is invariably going to be better than the current standard.
For instance, it may well be that even if patients receiving first line rociletinib do go 3-6 months longer before progression than patients on Tarceva, but then if patients who received Tarceva can then go on to benefit from rociletinib for another 9-12 months or more, but patients on first line rociletinib have no other EGFR-based treatments to consider, the patients receiving first line Tarceva may end up doing better in the long run. The goal isn't just to do well with your first treatment, but more importantly to do as ell as possible over the entire course of treatments that can help a patient.
Again, we don't know that rociletinib as first treatment is better than Tarceva as first treatment. If we did, we wouldn't need to do the trial; however, it would be wrong to assume that rociletinib is clearly the best first line treatment.
Good luck.
-Dr. West
Reply # - November 26, 2014, 07:11 PM
The purpose of this
The purpose of this randomized trial is to determine whether initial rociletinib is better than starting with Tarceva (erlotinib) and then moving on to rociletinib after that if the cancer then has a T790M mutation. The reason the trial randomizes people to one approach vs. another is that we don't know which is better. However, it's wrong to assume that the new treatment is invariably going to be better than the current standard.
For instance, it may well be that even if patients receiving first line rociletinib do go 3-6 months longer before progression than patients on Tarceva, but then if patients who received Tarceva can then go on to benefit from rociletinib for another 9-12 months or more, but patients on first line rociletinib have no other EGFR-based treatments to consider, the patients receiving first line Tarceva may end up doing better in the long run. The goal isn't just to do well with your first treatment, but more importantly to do as ell as possible over the entire course of treatments that can help a patient.
Again, we don't know that rociletinib as first treatment is better than Tarceva as first treatment. If we did, we wouldn't need to do the trial; however, it would be wrong to assume that rociletinib is clearly the best first line treatment.
Good luck.
-Dr. West
Reply # - February 24, 2015, 02:42 PM
My mother has NSCLC with EGFR
My mother has NSCLC with EGFR L858R and taking Tarceva 625mg daily along with Zometa 1x monthly. She has responded well to the treatment with just minor symptons; appetite loss, minor faint and dizziness and diarrhea, no rash. She takes appetite stimulants every other day to maintain body weight.
She is still in the Tiger 1 clinical trial.
In Jan 2015, CT scans revealed 3 nodules <2mm in breast and armpit region. Scans inconclusive in determining the spread to lymph nodes. Next step to perform a node biopsy to determine whether cancer has spread to lymph nodes. My mother has an appointment this Fri 2/27/15 with breast cancer surgeon.
Here are my questions:
1. How common does Adenocarcinoma show up new primary in the breast? Are the two even related?
2. If biopsy shows spread to lymph nodes, does Tarceva inhibit further progression beyond lungs?
3. What are the options if it has spread to lymph nodes?
I appreciate your responses.
Allen
Reply # - February 25, 2015, 04:37 AM
Hi Allen,
Hi Allen,
I'm sorry to hear of your mother's latest findings. I'm not sure you would call a new primary breast cancer common, but it isn't rare. Patients diagnosed with one form of cancer are at increased risk of developing another form down the line.
Tarceva can kill cancer cells wherever they appear in the body, and it is likely that it is continuing to do so, despite the possible presence of some cancer cells in the lymph nodes which may have become resistant to it. Whether she continues on Tarceva is a judgment call which her oncologist can help her make, based on how much progression there is and how quickly it is progressing. At times it is best to continue a targeted therapy such as Tarceva if the cancer is mostly being controlled.
If it is judged that there is progression and that it is significant enough to warrant a change of treatment, there are a number of options available. Third-generation EGFR TKIs designed to combat acquired resistance are being tested in clinical trials, as are immunotherapy drugs. And of course standard chemo agents could also be used.
There are many posts and podcasts available here on the subjects of acquired resistance options; here is one to get you started: http://cancergrace.org/lung/2014/11/14/ar_forum_novel_egfr_inhibitors_a… There are additional links at the bottom of that page, and if you search this site for the terms "acquired resistance" and "immunotherapy" you will find a wealth of information.
JimC
Forum moderator
Reply # - April 3, 2015, 03:06 PM
My mother has new primary
My mother has new primary metastatic cancer in her breasts. She tested triple negative for ER, PR and HER2. She had radical mastectomy performed March 20 to remove her left breast and 8 lymph nodes. They also discovered a small growth on the right breast that was Stage 1 <2mm tested positive for ER+. The surgeon decided not to remove these since it was not as invasive and early stage.
As I described at the beginning of this thread, my mother has NSCLC for which she has been taking Tarceva 625mg once daily, and Ziometa 1X monthly. She had been responding well to Tarceva inasmuch as her lung cancer was concerned.
Now, having also the invasive breast cancer, her oncologist has prescribed chemo and stopping Tarceva. He prescribed Gemzar and Paraplatin in hopes it will kill NSCLC and breast cancer cells. He suggested the chemo treatments might take 4-5 months. He decided to hiatus Tarceva while she is on chemo.
My questions: Does taking chemo prevent her from taking Tarceva in the future? Does the chemo 'undo' some of the progress she while taking Tarceva, or does it continue to fight the lung cancer where Tarceva left off? She had been seeing some regression in cancer cell growth. Is she resumes Tarceva after chemo, will its effectiveness be reduced because of the chemo? I heard 2nd and 3rd line treatments are reduced effectiveness. What about 1st line when delivered in stages?
Finally, since Tarceva is a long acting drug, will there be an overlap period when she experiences side effects from both the chemo and the Tarceva?
Your responses are appreciated. Thank you for your patience and time,
Allen
Reply # - April 4, 2015, 09:07 AM
Hi Allen,
Hi Allen,
There isn't considered to be any added benefit from taking both tarceva and chemo simultaneously especially with the combined side effects. No one can say for sure that moving back to tarceva will "pick up where it was stopped" but in cases where there is little or no other options it is often done with success. There is quite a lot of data that show tarceva taken after chemo can have as much benefit as taken in first line alone.
Since having more than one cancer at one time is pretty rare there isn't data to show what the best thing to do is so making judgement calls is the best practice and extremely individualized. Using a chemo that has efficacy in both cancers sounds very appropriate. A second opinion can always add another head into the thought process.
All best,
Janine
Reply # - April 4, 2015, 02:43 PM
As a 77-year-old multiple
As a 77-year-old multiple cancer survivor (NSCLC since 2009, thyroid cancer in 2013, and triple-negative breast cancer diagnosed in 2014), I can sympathize with what your mother is going through. Multiple therapies with multiple sets of side effects can be difficult and frustrating (let's see, do I take the Tarceva at midnight or 3 a.m. to meet its requirements, and the aromatase inhibitor at 7 a.m., etc.). There are funny moments, too, if you're not in the middle of the nausea or diarrhea or other side effects (sometimes even if you are). I'm in Southern California, too (Long Beach, with treatment at UCLA--an awful drive but worth it to me). I can't answer any of your (or her) medical or treatment questions, but I can offer support and a friendly ear and shoulder. Ask GRACE if they can put you (or her) in contact with me if you want to talk non-medical stuff.
Nan
Reply # - April 4, 2015, 09:35 PM
Thanks Nan! :)
Thanks Nan! :)
Reply # - April 7, 2015, 11:44 AM
Nan,
Nan,
I would like to chat with you regarding your multiple cancers. It's uncommon to find similar profiles of NSCLC and triple negative breast cancer. Also, my mother had thymoma. She is 77 also.
Please call me 203-612-0470 PST anytime! I would love to hear from you!
Allen
Reply # - June 15, 2015, 12:58 PM
My mother has started
My mother has started Carboplatin and Gemzar biweekly routine for her triple negative Stage 1 breast cancer following mastectomy (+8 lymph) in her right breast.
She continues to respond well to Tarceva.
I am still unclear why my mother's doctor chose Carboplatin and Gemzar for breast cancer recurrence treatment. I understand Carboplatin and Gemzar have added benefits in treating lung cancer, but why in particular these two chemo? Are there other options? When I research avail chemo, there's long list with not a lot of differentiation.
Are there other chemo combinations that have worked well in NSCLC EGFR exon-19 and triple negative breast cancer combinations? Is it a best guess on the doctor's part?
Thanks,
Allen
Reply # - June 16, 2015, 10:51 AM
Allen,
Allen,
How is you mom feeling.
There wouldn't be a standardized or data driven treatment regimens that best targets this situation and the oncologist's experience and best guesses come into play. However carbo and gemzar is a doublet used in both nsclc and advanced breast cancer including triple negative.
Toxicity is the biggest concern with the platinum doublet plus tarceva. Of course everyone is individual some sail through while others have much difficulty.
Something else to consider along the lines of toxicity. Targeting treatment to the most aggressive of the 2 cancers is often a planned method as well as finding a drug that targets both cancer. NSCLC is usually the most aggressive. Gemzar has been used for long term stability in nsclc even though not studied specifically for this (most likely because testing is very expensive and gemzar has already been approved in doublet use and is easily approved by insurance for later line single or doublet agent.)
I hope your mom does well for a long time.
Janine
Reply # - June 17, 2015, 08:25 AM
Catdander,
Catdander,
Thank you for the information and your concern. I was looking at your husband's progress history. What does NED stand for? Why did he go off Tarceva?
Allen
Reply # - June 17, 2015, 01:11 PM
Allen,
Allen,
NED is no evidence of disease. A term used in nsclc that describes a complete response to all visible disease. However it doesn't suggest cure because cancer cells are presumed circulating in blood or lymph system. As time goes by D gets closer to being considered cured.
I hate to give D as an example because for one we don't have all the info needed to say what exactly happened and secondly whatever happened was quite rare. The only diagnosed biopsy was from a thoracotomy to his pancoast tumor at diagnosis. A pancoast tumor reaches outside the lung and into the chest wall. Some people with pancoast tumors have been cured by surgery and fewer by chemo radiation. D's surgery wasn't curative. He was treated with curative intent with chemo and radiation. At two points after curative treatment he was thought to have metastases. One was biopsied which caused lung collapse the other was bone and couldn't be biopsied. A team of oncs, med, 2 rad, and 2 surgeons and the radiologist believed these to be mets. Maybe they were maybe not. Maybe he was cured with chemo/rads.
Treatment was given as for stage IV for 2 more years before stopping. He's been without treatment for almost 3 years. Time with tell.
Tarceva was given after first line chemo/rads. He was thought to have spine mets after 1st line maybe there even before diagnosis. After 10 months on tarceva a 3 cm mass appeared in opposite lung biopsy failed to retrieve cancer cells and caused collapse. It was decided to assume cancer and changed treatment to gemzar. The mass eventually disappeared within a year.
Long story long,
Janine
Reply # - July 8, 2015, 03:34 PM
My mother is complaining of
My mother is complaining of discomfort arising from irregular heartbeat. She has had mild Arrhythmia for most her life. She has never taken any heart medication nor has she undergone heart surgery of any kind.
Would Tarceva and Carboplatin and Gemzar combo treatment cause weakening or malfunction of heart valves?
Would discontinuing any one of these medications temporarily allow the heart to heal? Would heart procedure be advisable at this time? My mother went to two cardiologists last week. Their opinion was "wait-and-see" which seems like a palliative approach to me. Seems to me if my mother did not have all these other issues (NSCLC EGFR+, triple neg radical mastectomy), cardios would recommend heart procedure.
Weighing the possibility of recurring breast cancer against possible heart failure, does it make sense to hiatus the chemo regimen?
Thanks,
Allen
Reply # - July 9, 2015, 06:31 AM
Hi Allen,
Hi Allen,
I'm sorry to hear this about your mom. However we're not able to answer a question of such an individual nature especially since the problem is due to a heart issue plus taking both chemo and tarceva at the same time isn't well studied. A close look at the situation by a board of specialist with all the info is most able to answer that question. Is it possible for her to be seen at a large teaching hospital that is most likely to have specialists in both fields?
With co-morbidities the most dire most likely needs attention at any one moment.
I'm sorry we can't answer your question.
Keep us posted,
Janine
Reply # - July 9, 2015, 06:31 AM
Hi Allen,
Hi Allen,
I'm sorry to hear this about your mom. However we're not able to answer a question of such an individual nature especially since the problem is due to a heart issue plus taking both chemo and tarceva at the same time isn't well studied. A close look at the situation by a board of specialist with all the info is most able to answer that question. Is it possible for her to be seen at a large teaching hospital that is most likely to have specialists in both fields?
With co-morbidities the most dire most likely needs attention at any one moment.
I'm sorry we can't answer your question.
Keep us posted,
Janine
Reply # - July 9, 2015, 08:58 AM
Janine,
Janine,
Thank you for your support and replies.
Allen
Reply # - January 18, 2016, 04:52 AM
It's been some time since I
It's been some time since I wrote to this forum about my mother.
My mother has been on Tarceva for NSCLC EGFR+ exon 21 del for over 1 year living a normal life for the most part. She has had regular visits to her oncologist and cardiologist. She has gone through 12 weeks carboplatin and gemzar regimen followed by 5 weeks radiation treatment for breast cancer triple negative. For her 78th birthday, my sister's family and my family all flew out from NY-CT to SoCal to be with her and my father.
She is now almost entirely bed ridden because of heart irregularities and difficulty breathing. She has low sodium and potassium levels which she has tried to increase with diet and IV at her oncologist's office. Last week, she went to the hospital and fluid was removed from her lungs which improved breathing temporarily. She had PET scans last April which showed no progression.
Is my mother suffering from the long term side effects of Tarceva? What are some ways to counter these side effects? Are there other targeted therapies that have lower toxicity footprint? Can any of medications be pulsed effectively or switched back and forth to counter the effects of toxicity build-up?
Reply # - January 18, 2016, 12:57 PM
It sounds like it is time for
It sounds like it is time for some restaging CT scans. Her symptoms could be attributable to cancer progression.
Reply # - March 2, 2016, 05:03 PM
My mother has pleural
My mother has pleural effusion now and uses a catheter to eliminate fluid to help her breathing. She has taken 150mg Tarceva daily for about 16 months with Xiometa monthly for NSCLC EGFR+ exon 21 deletion. She has had a radical mastectomy plus 8 node lymphectomy and 5 months of chemo last summer for triple negative breast cancer and 5 weeks follow up radiation.
The breast cancer has not grown according to the latest test results. The lung cancer has not grown significantly as of last PET scan January 2016
She is testing for T790M mutation. We expect results soon. The oncologist has reduced Tarceva and phasing in Opdivo. Is there benefit to a two drug treatment program right away versus waiting to see whether Opdivo works before trying Tagrisso? Isn't time of the essence in affecting the spread of lung cancer now? We know insurance will cover one but my family is willing to consider paying for the other ourselves. We know the costs of Tagrisso but we are willing to discuss it.
Reply # - March 3, 2016, 11:11 AM
There's no trending thought
There's no trending thought that mixing an egfr and immunotherapy as one treatment is better than singly. There are trials today that are testing some drugs that aren't typical or standards for lung cancer but not these 2. The thought there is to try each one individually because they each have shown efficacy on their own (if appropriate), sometimes very long lasting efficacy. When treating stage IV you want each treatment to last as long as possible.
Along those lines when someone has done well on tarceva they often will continue the drug even with slow progression until it's necessary to change. When there's one or two areas of growth often radiation is used because the resistance to tarceva is only in that spot while the rest of the cancer is still responding.
I hope your mom does well with her treatments.
Janine