My brother, age 57, non-smoker, otherwise good health, has stage 4 NSCLC with mets to organs, bones and brain. He was disqualified from a first line immunotherapy study because of the location of a brain tumour near his brain stem (pons rings a bell). He has now completed whole brain radiation and two rounds of chemo - pemetrexed and cisplatin - and had a serious blood clot in his leg between the first and second chemo treatment. He is still working, mostly from home, is eating little more than boost, juice, fruit, yogurt and cereal, napping once or twice a day and not walking more than he has to due to not feeling well, fatigue and shortness of breath. He has a CT scan scheduled in a week, which will presumably provide an indication of the efficacy of the chemo. No brain scan is scheduled. My question is - should the chemo not be working, what other options might we explore? Vis a vis qualification for studies, my brother is a dual Canadian American citizen, living on the west coast, with residences in both countries and health insurance in Canada.
Thank you for any help you can provide. Janet
Also, he was tested for EGFR and ALK - not relevant. No testing for ROS1 or other indicators.
Reply # - August 1, 2016, 03:08 PM
Hi Janet and welcome to Grace
Hi Janet and welcome to Grace. I'm very sorry your brother has this diagnosis, I can't imagine what it must be like for him but know all too well the anxiety it causes those who love someone with a stage IV nsclc diagnosis and want to make sure they are getting the best treatment.
Other chemos such as taxotere and gemzar are available to try if the first line doesn't show efficacy however it is most often the case that if the first line chemo containing a platinum doesn't show shrinkage or stability other chemo drugs are unlikely to work. Those who respond to first line are more likely to respond to a 2nd line chemo.
Even without the egfr mutation tarceva has shown efficacy to a lesser extent in those without the mutation and is FDA approved 2nd line treatment for those without an egfr mutation.
If at all possible a test to look for ros1 is important. There's only a small chance he has the ros1 (single digit %) rearrangement but if he does there is a targeted therapy, crizotinib that has shown to be extremely helpful sometimes for years. Another non chemo approach are the immunotherapies approved for 2nd line treatment, however they haven't shown to be as promising for never smokers or those with a small smoking history.
A trial might be a choice as well. Each trial has it's own set of inclusion and exclusion criteria so don't assume a trial wouldn't be an option because he didn't meet criteria in one.
In case you've not seen this, I haven't yet but I'd bet it's a wealth of information, http://cancergrace.org/lung/2016/07/18/asco-2016-local-consolidation-th…
I hope this helps and I hope your brother does well for a long long time.
All best,
Janine
Reply # - August 1, 2016, 08:24 PM
Hi Janine,
Hi Janine,
Thank you for your very prompt reply and helpful suggestions. I will pass the info onto my brother and we will follow up accordingly. I admire your dedication and all the work you are doing.
Janet
Reply # - August 2, 2016, 11:26 AM
I want to add this blog post
I want to add this blog post from Dr. West that speaks directly to your question. It's from our FAQs that can be found on the right column of all our site pages. Some posts, as this one is are several years old so lack the mention of the newest treatment options such as ALK inhibitors and most recently approved immunotherapies.
All other options remain the same and still effective. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
Reply # - August 2, 2016, 05:14 PM
Hi Janet.
Hi Janet.
I am so sorry to hear about your brother's diagnosis. My wife was a non-smoker diagnosed last year with Stage IV NSCLC, and is now on a clinical trial drug, so I know the stress of trying to find the best approach for a loved one.
I wanted to add one more thought to Janine's idea of testing for ROS1. If a physical biopsy isn't feasible at the moment, you might consider asking about a liquid biopsy which just requires a standard blood test (e.g. Guardant). At first our oncologist was skeptical of the results, but these tests have been becoming more and more reliable, and are testing for more and more mutations. Our Guardant blood test was paid for by insurance and its result (HER2 mutation) was later verified by a physical biopsy (through Foundation). As Janine pointed out, each clinical trial has its own inclusions and exclusions, and some of them are now looking for patients with specific genetic markers or specific mutations, so a genetic analysis (by physical or liquid biopsy) might be of use.
We'll keep you and your brother in our prayers and thoughts, and wishing for a great CT scan and an effective treatment that lasts for a long time.
Reply # - August 2, 2016, 06:35 PM
Thank you. Prayers and
Thank you. Prayers and thoughts for your wife too.
Reply # - October 12, 2016, 11:20 PM
So pleased to see the picture
So pleased to see the picture of the Cohn wedding. How very special!!!!
My brother has had a second CT scan after 4 rounds of cisplatin-pemetrexed with the cisplatin reduced part way through due to adverse side effects. The treatment reduced tumours after two rounds but not subsequently so his cancer status is stable. Due to poor performance status, he will not do immediate pemetrexed maintenance and a follow up CT is planned in two months to check for progression. We are somewhat confused as to the cause of his poor performance (sleep wake approximately two hour cycle, three boosts a day plus gatorade max intake, intravenous hydration, vomiting a number of times a day, continued weight loss but also still working from home a few hours a day). Hard to believe it is just the lingering effects of the last chemo treatment four weeks ago, as we have been told. Wondering if it is brain tumour related (rescan of brain not on offer), blood thinner related or just the cancer. Vis a vis next steps : we will be getting the ros1 test done shortly (these things are more difficult to arrange in Canada). Have had no indication about what the second line treatment might be. I will ask about the Tarceva. I am interested in posts about immunotherapy and flares / pseudoprogression in lung cancer versus melanoma as he was disqualified from first line trial due to a challengingly located brain tumour. I explore the trial lists but doubt his current performance status would support enrollment or that he could even get to the treatment locale or that we could sort out the Canada US thing. Nonetheless, all suggestions welcome! I am amazed with the wealth of up to date and user friendly info every time I check your website. Thanks so much.
Reply # - October 13, 2016, 07:01 AM
Hi Janet,
Hi Janet,
I'm sorry to hear of your brother's continuing difficulties. With so much going on, it's hard to know what is causing his symptoms, but in addition to lingering effects of chemo, I would not discount the effects of whole brain radiation. Some patients sail through it with minimal problems, but others have fatigue and other symptoms which can last for a few months or longer.
As far as a follow-up MRI of the brain, his doctors may be hesitating to order one yet, because it can take a while for the effects of whole brain radiation to become clear on a scan. Before I became informed about how radiation kills cancer cells, I assumed that it was like a weapon in a sci-fi movie, and the cancer cells just melted away instantly. Instead, it damages the DNA of the cells, creating a chain of events that eventually kills those cells and prevents the creation of new ones. In the meantime, a the images on a scan can be difficult to interpret, trying to sort out whether the cancer cells are there or whether what is seen is from inflammation from the radiation.
I would also add that though some of the symptoms you describe could be attributable to brain mets, more typical symptoms would be headaches, focal weakness (such as in a particular limb as opposed to general weakness), double vision or seizures.
It is true that until a scan can document that the brain mets are under control, many trials make that an exclusion criteria.
Since your brother responded to chemo (most patients who respond get the majority of shrinkage in the first two cycles), that makes it more likely that maintenance with pemetrexed or treatment with other chemo or targeted agents will be effective. As Janine stated, Tarceva is approved for second line treatment and In the U.S. the FDA has also approved Taxotere (docetaxel). In addition, there are other agents such as Taxol, Gemzar and Navelbine which may help.
I hope his symptoms improve soon.
JimC
Forum moderator
Reply # - October 14, 2016, 05:29 AM
As a NSCLC survivor, I'd just
As a NSCLC survivor, I'd just like to add that his side effects are not abnormal especially with cisplatin and alimta. He just barely finished and the WBR wasn't that long ago and as Jim has said, it's still working.
I had carbo/alimta and the fatigue for me was very extreme. Sometimes I would be trying to make something to eat and have to go lay down. When it hits, you just need to rest. I couldn't push through it.
It was a month after being off all chemo that I started getting some energy back. However, I can still after 3 years get fatigued easily on some days. Unfortunately, it's what we call the "new normal" and each person has to learn to adjust to their own as we're all different.
Is he still taking the folic acid daily after stopping the alimta? This is supposed to be done for a month after completion of alimta. Is he on steroids? He really should try eating a variety of foods but probably stay away from spicy and acidic. Eating smaller meals 5 times a day could make a difference in his energy level.
Wishing him all the best.
Take care, Judy