EML4-ALK Mutation

Hi,

My name is Kevin Brumett. In August of 2007, I was diagnosed with stage IIIa/b Non-Small Cell Lung Cancer at the age of 29. As it always is when being diagnosed with any form of cancer, I was shocked. I was especially concerned because of the lack of information that exists surrounding lung cancer and the extremely poor survival statistics. I am a lifelong non-smoker and I have always remained active in sports and athletics. I'm writing today because I want every single patient who has been diagnosed with non-small cell lung cancer to tell your doctors that you want to have your tumors biopsied and tested for every type of genetic mutation that they know of, especially the EML4-ALK mutation. I had been on six cycles of Cisplatin/Alimta with minimal results. I then had two months off before taking Tarceva with negative results. I then went on two more cycles of Alimta. As I was on Alimta the last time, my oncologists and pathologists discovered that the EML4-ALK mutation exists in the tumors in my body. It is very weird to think about it now, but the timing of this was impeccable because a clinical trial was open through the Harvard medical system up here in Boston, MA for a study of a inhibitor drug that targets the EML4-ALK mutation. I started the drug on June 5th. I went over the scan results yesterday with my clinical trial team to compare with the baseline scans taken before beginning the clinical trial. To say that the drug is working...is an understatement. The tumor is dead from the inside out, which is called necrotic cell death. The left side of my lung, which was shrouded in a cloud when viewing the baseline CT scan, is now showing more signs of it becoming clear. Substantial response. I hope that the drug continues to destroy these tumors that are located in my left lung and pleura. The lymphatic activity has also decreased significantly as well. If any of you have biopsies, I urge you to tell your doctors that you want them tested for genetic mutations such as EGFR, K-RAS, EML4-ALK and every other known mutation. The drug's side effects are minimal with diarrhea once a week and some nausea at the beginning but your body gets used to it. The side-effects are MUCH more tolerable than platinum based chemotherapies.

I am receiving treatment at Beth Israel Medical Center in Boston, Massachusetts. I am also consulting with lung cancer specialists at the Dana Farber Cancer Institute in Boston, MA and a lung cancer specialist at Memorial Sloan-Kettering located in New York City.

If anyone wants to email me, my email is kevin_brumett@yahoo.com.

Take care and stay strong,
Kevin

Report post

74 replies. Join the discussion

Thanks for the info Kevin! I'm so happy to hear of your positive results. Does anyone know if they routinely check tumors (especially when surgically removed) to see what chemos they react to and for at least EGFR? I have heard conflicting things.

Kevin, I hope your next scan is even more positive than this. Good luck with your treatment and stay positive!

Linda

Report post

That's great news, Kevin!

When I was at ASCO with LCA this year, I attended a lot of the lung cancer sessions, and I was amazed by what's going on with biomarker testing. We are seriously around the corner from some amazing personalized medicine. We work with another company to provide a clinical trials matching service for lung cancer patients. I would encourage people to call and find out what kinds of clinical trials are going on related to biomarkers and genetic testing. Even if you are at day one of your diagnosis, you shoudl know what's out there because a lot of these trials and studies rely on tumor samples, and oftentimes when you have a biopsy or even if you have surgery, the samples aren't saved well. So in a way, it's important to know what's out there so you can say to the doctor "listen - I need a good tumor sample for this trial, so don't screw up. "

Okay, well, maybe not that, but something like it. ;-)

The truth is, many places do not routinely test for these things, and not all of the tests are totally accurate anyway. But it helps to know what's out there and what's being studied.

Fingers crossed that your tumors continue to disappear.

Best wishes,

Amy

Report post

Hi Linda and Amy,

Thank you both for your encouragement. I appreciate it. I'm very excited about this! Linda, I'm not sure about whether or not oncologists will test the biopsies for the EGFR mutation or others automatically. I remember when I had VAT surgery last August, my oncologists recommended that I have the testing done and once I agreed, I signed paperwork for my acceptance. I would recommend what Amy suggested and tell your doctors that you want them to test for these mutations. Remember, they are working on your team.

Report post

Hi Kevin

thats great news. What is the name of the drug you are on?

I am trying to get my husband tested for EGFR mutations here in UK and its very difficult. They do not do it here unless going into a trial. Any info would be useful. Thanks
pam

Report post

Kevin,

That is great news. Congrats to you! My mom has NSCLC stage IV with mets to her pevic bone. She has had 2 chemo treatments and is going for her PET scan tomorrow to see if the chemo is working. I'm praying that it is. Could this genetic mutation testing be done on someone who has already had biopsies done a couple of months ago? I'm just curious if they keep the tissue from the biopsies and could they check the same tissue for other things? My mom has adenocarcinoma.

God Bless you,
Tammy

Report post

Hi Kevin,

Great news. Can you please inform us of the name of the inhibitor drug you are taking that targets the EML4-ALK mutation. Do know of any other drugs that target this mutation.

I know that tarceva (erlotinib) and iressa (gefitinib) can be effective in people who have the EGFR mutation, especially those with adenocarcinoma.

Also, do you know of any drugs that target the K-RAS mutation.

Thanks. hlt.

Report post

Hi Pam,

The drug that I am currently taking is a clinical trial drug. The name is PF-02341066. It is a Pfizer drug. It has not been approved by the US FDA because it is currently for investigational use only, but it is definitely working.

In regards to testing for the EGFR mutation. My biopsies were sent from Beth Israel Deaconness Medical Center in Boston, MA to a biotech company that I used to work at called Genzyme. They do the EGFR mutation testing. If hosptials in the UK cannot test your husband's biopsies unless there are clinical trials available, I suggest you come to Massachusetts and get treatment at Beth Israel, Dana Farber or New York City for Memorial Sloan-Kettering. All three are excellent. If that is not an option for you, I would talk with other oncologists at different hospitals throughout the UK to find an institution that will test the biopsies without having any available clinical trials. I hope this helps. Let me know how you both make out.

Best,
Kevin

Report post

Hi Tammy,

The Pathology department should definitely have the biopsies from your Mom. My biopsies were from August of 2007 and the pathologists at the Dana Farber Cancer Institute tested them in May of 2008. What can happen though, is that the characteristics of the tumor may possibly change from the last time the biopsies were taken. My oncologists were waying the option of having a needle biopsy taken of some fluid in the pleura, but ultimately decided against it because the amount was so small and it was close to my heart. They were going to start a new cell line with a biopsy from May of 2008 to see if the tumors changed characteristics from what they exemplified in August of 2007. They would also be able to test different drugs on the cells to see if they would receive a response before putting me through medicines with harsh side-effects.

That being said, your Mom's hospital should still be able to test them for these mutations or send them out to a pathology lab that can test them. I would contact Dana Farber and try and get an appointment to speak with a lung cancer specialist and ask their opinion. They are at the cutting edge of this technology.

Take care and keep in touch.

Best,
Kevin

Report post

Hi Tammy,

One last thing...there is the capability out there to test the same biopsies for various mutations. That is what Dana Farber did for me.

Stay strong,
Kevin

Report post

Hi Hlt,

I do not know of any other drug that targets the EML4-ALK mutation. I do know that there is a Phase II clinical trial that is currently taking place at Memorial Sloan-Kettering in New York City that targets the K-RAS mutation. My biopsies are currently being tested at their institution for the KRAS mutation because their protocol is much more stringent than other facilities for this mutation.

Best,
Kevin

Report post

Hi Kevin

thanks for that information. I am going to pursue this here, I have already contacted private companies, but my husbands oncologist does not recommend this. He is not being completely helpful, and thinks there is time enough to find out in the future, he does not have the same sense of urgency. Would be different if it were him.
I have some avenues to explore yet. I may just end up finding out how we can get it done in the US. Just have to work out the logistics! Another option is to use the german doctors that he had treatment with, who are also excellent.
Thanks for the info, will keep you informed.
Pam

Report post

Hello Kevin,

Just wanted to welcome you here and thanks for the information. I hope that this study continues to work great for you!

Sharon

Report post

Thanks for the information Kevin - so happy this is working for you. I am going to look into these tests here in Canada - stay positive!

Report post

Hi Kevin,

Glad you are doing so much better! How did they "discover" you had this mutation? You did not mention having surgery. I am IIIB and was told surgery was not possible (see my profile). After being told that at the diagnosis, I had Carbo/Taxol/Avastin for 4 cycles and was NED. I continue with Avastin every 3 weeks and take Tarceva in clinical trial of using Tarceva as a first line drug. Have never been tested for any genes. I don't think they kept anything from my thoracentesis.

Valerie

Report post

Hi Kevin,

Glad to hear of such great progress. Sorry to hear you have to deal with this so early in your life.

Best wishes,
Joyce

Report post

Hi Valerie,

Back in August of 2007 I underwent VAT surgery where they biopsied some of the tumors in the pleura. I also had a bronchoscopy the week before. The biopsies that they tested were from the VAT surgery. I would ask your doctors if they can test your biopsies. If they are unable to, I would also contact the Dana Farber Cancer Institute to find out if they can test them.

Report post

Hi Valerie,

Surgery isn't an option for me right now either. The VAT surgery was to obtain a better biopsy as compared with the bronchoscopy. The pathologists and oncologists performed various tests on the biopsies to determine what characteristics the tumor cells exhibited.

Best,
Kevin

Report post

Great News Kevin
Very glad to hear you are experiencing success with this drug. I am am about to start a trial of PF-02341066 as well. I was curious as to how you are tolerating it, and what are the common side effects. Please let me know.
Thanks,
Laura

Report post

Hi Laura,

The side-effects that I have been experiencing are minimal. I do get naucious every once in a while and also get diarrea but not as frequently as compared to when I first started taking the drug. The first couple of cycles I was not allowed to eat (2) hours before or after taking the drug, so I went get naucious more frequently. Now that I can eat a little bit (bagel or crackers) with the drug, it is much more tolerable. Also, my liver enzymes are elevated, but remain stable. All and all the drug is MUCH more tolerable than any other that I have been on. The other drugs include: Cisplatin, Alimta and Tarceva. We tried Tarceva even though I do not have the EGFR mutation. PF-02341066 has been a miracle drug for me so far and I pray to God that it continues and has the same positive response for you as well. Let me know what your experiences are and stay strong. If you would like to email me, my email address is kevin_brumett@yahoo.com.

Take care!

Best,
Kevin

Report post

Hi everyone,
I just wanted to let you know that I am on the same drug as Kevin and it is working for me as well. I am from New Zealand and am travelling to Melbourne in Australia fortnightly to be on the trial. I was really lucky that the trial happens to be running in Australia as well as in the US. I did not respond to Tarceva, did respond well to carboplatin/Taxol chemo but then didn't really have any more good options and still had multiple sites of disease. I only heard about the trial because I have a friend in Boston who is friends with one of the oncologists running the trial. My doctor in New Zealand did not know about it at that stage. I got my tumour tested for the EML4-ALK mutation by sending tissue to Boston, and it turned out that I did have the mutation. I started the trial 6 weeks ago, and 2 weeks ago I had a second PET scan which showed that in only 4 weeks there had been a significant reduction in both size and activity. The kind of PET they do is experimental so they are waiting for the CT at 8 weeks for greater certainty but the reduction was really clear on the images. Like Kevin, the side effects for me are minimal. So do go and get your tumour tested! Even if you are not quite ready to go on the trial now, it's worth getting things in motion so you know if you have the mutation or not. It looks like it's only quite a small number of people with NSCLC who have the EML4-ALK mutation, but if you have it you should REALLY know about it because things are moving fast in this area.
Good luck to everyone. Sarah

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Photo of Dave Grant

The Lung Cancer Survivors Support Community has provided support for patients, caregivers, families and friends since 2006. We welcome over 600 new members every month in the fight against lung cancer.

ALK mutations and lung cancer

Join the discussion about ALK mutations and lung cancer

Things you can do

Discussion topics

Community leaders