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

By linnea
Posted September 15, 2009 at 7:20 am
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Sarah--so good to hear from you! I'm ecstatic that you are doing well--I have often thought of you. That is very encouraging, the data you state about the possibility of "cure". Oh, let's hope so! I agree that Pfizer and the oncology community in general seem very excited and are really investing in this. I, for one, am feeling just incredibly positive. Oct 1 marks one year in the trial for me, I turn 50 in November, and it will be five years since dx in April. They all feel like huge milestones. To life!
Take good care, Linnea

By SarahNZ
Posted September 14, 2009 at 9:11 pm
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Hi everyone,

Just to let you know that I, like Linnea, am going strong after being on the drug for more than a year. I also had a 'partial' response (more than 40% reduction) and then my scans stayed stable. I have a small amount of tissue around a hole in my lung - it is possible that some or all of this is scar tissue. I am very healthy and well - totally asymptomatic and very energetic. The drug still has virtually no side effects.

We don't know why some people respond and some don't, also why people stop responding. I am certainly not assuming that I will ever stop responding. Some of the initial data showed that out of the people who have had the strongest responses (like Linnea and I, over 40%), none of those had yet stopped responding. It is possible that people who respond strongly to the drug may have a simpler kind of tumour, driven by a single mutation. Perhaps we ARE cured! Who knows!! I am not ruling it out, that's for sure. And I am doing a lot of other therapies and things to make sure I have the best chance of catching any survivor cells.

I am very sad for Kevin and his family - he was obviously a great guy. But this drug can still provide hope for many other people. A phase 3 is starting soon because Pfizer is so excited about this drug. So do go get tested.

Sarah

By linnea
Posted September 12, 2009 at 9:51 am
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On October 1st I will have been on PF-02341066 for one full year--and I feel great and my scans have remained stable (partial, but significant response according to the data--according to me, AMAZING response). Linnea

By raizinlove
Posted September 11, 2009 at 10:04 pm
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My partner will be starting the Phase 1 trial at IC Irvine. We will travel to L.A. from Berkeley, CA. We found out in March 2009 that she has the ALK mutation and are hopeful.

After progressing after 4 rounds of carbo taxol (which initially helped stabilize, but then became too toxic to continue), Stacy has been on a 3 month break with no treatments, but we found out the cancer is growing, so she needs something!!!

How are things going with you all now? I know that the treatment has not always continued to help. If so, I wonder what you all continued to so afterwards.

All the best and so good to hear from you all.

Heather

By Mar24
Posted September 3, 2009 at 7:45 pm
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Kevin - Thank you for the information. I will definately have to check next time I see my doctor if they have tested for any of that yet. I know they have tested one or two things, which at the top of my head I know it is not what you indicated.
Thank you for sharing your story.
Maribeth

By dfourer
Posted September 3, 2009 at 7:21 pm
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In December 2004 I was doing poorly and getting no response from the then-new EGFR drug Iressa. The next drug I tried was Alimta (Pemetrexed). I had the same kind of dramatic response kfbrum described. I returned to normal good health. incredibly, I got almost 3 years out of that drug. The side effects were minimal for me.

A succession of treatments since then has kept me going, but I think I am running out of time. I was rejected for the Pfizer PF-02341066 trial for medical reasons. I hope that some kind of alternative will be offered for people rejected from trials. I meet the requirements for people likely to have this mutation (younger patients who didn't smoke and did not have the EGFR mutation).

It will help all of us if a lot of eligible people sign up for the trials.

David

By MariasFriend
Posted July 1, 2009 at 3:31 pm
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Dear Linnea,
Thank you for the post. I had emailed Kevin and when I didn't hear back from him I was hoping it wasn't because of his passing, but feared it might be. I'm so sad and sorry to hear that such a young man could not be saved. I saw all the info regarding the mutation and was very hopeful for my friend. As it turns out, she does not have the ALK mutation, so it's a mute point now, however, I think Kevin said he did have it. No one knows why some drugs work for some and not for others. This is a very difficult disease and it's even more heart wrenching when it's a young athletic non smoker. I'm so sorry for your loss. He is our loss now too, and I am very saddened by the turn of events. We are all so helpless.
Keep his strength and memory alive for all of us.

By linnea
Posted June 26, 2009 at 10:00 am
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This is difficult to post--but I feel it is necessary to let people know that Kevin passed away on 5/28/09. I was enrolled in the same trial as Kevin, and I told him once that he was like my beacon in a storm--he was always so brave and positive. Kevin fought as hard as a person could fight--and it would be impossible to have a sunnier outlook than Kevin had.
It is not only terribly sad, but it makes all of us feel uneasy when one of our own, someone who fought so valiantly, passes. There is a terrible randomness to all of this--and it is important to not lose personal hope. I miss my friend Kevin, but feel compelled to fight even harder in his memory.
Linnea

By Mar24
Posted June 25, 2009 at 9:41 pm
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Kevin - Thanks for the information. My doctor and I were just talking about the testing the other day. I have already signed the necessary paperwork to have this done. The problem is that most insurance companies will not pay for the testing which is sad in itself, but hopefully it will be second nature like CT Scans. Right now I am N.E.D. so I am not a candidate for any clinical trials at the moment. My doctor said that sometime in this next year he will be completing testing on the biopsies they took last year. Anyway, I am so happy to hear you are doing so wonderfully, that is truly amazing. Keep up the great work and keep us posted on how things are going.
Maribeth

By Columbine
Posted June 25, 2009 at 9:23 pm
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There are several hospitals in the U.S. that are doing this clinical trial. I ran across it on a website. There's one in California, New York, Boston and I'm going to do mine at the University of Colorado Hospital in Denver. Frequent visits are required at the beginning but then it levels off to once every 3 weeks. You must also be off of all drugs/chemo for 28 days prior to the study. I just learned this today myself after talking to my doctor. It really helps to read testimonials from people who have already done it. Thanks for sharing, Kevin.

By Columbine
Posted June 23, 2009 at 7:45 pm
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We're all in the learning stages. I was just recently tested and was able to use a sample from a biopsy taken almost 2 years ago. Evidently, they keep that stuff for virtually forever in wax cell blocks. You would just call the hospital where it was done and request it to be sent. You would probably need to contact a doctor involved in the clinical trial who would know where to send it. Not just any lab can do that. Good luck

By SarahNZ
Posted June 8, 2009 at 6:59 pm
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Hi Ruc,

I'm afraid I don't know the answer to this. I was in contact with one of the oncologists at Harvard, through a friend, and he arranged for the tissue sample to be tested in Boston. I sent the tissue sample over from NZ. But this was at the very beginning of the trial - I think now you actually have to go to one of the sites - Boston, Melbourne or I think somewhere in Korea - and sign a consent form to have the tissue tested. It would be best for you to ask the trial doctors directly, probably best to go through Dana Farber Cancer Centre in Boston.
Good luck. Sarah

By kallumama
Posted May 18, 2009 at 1:17 pm
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Hello Sarah,

My MIL has stage 4 NSCLC and I was reading about mutation testing for her. From what I have found out till now, it is not available in India(Is there any other Indian resident on this forum who has found how to get this done in India?).

>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.
How did you send the tissue to Boston, did you actually travel to US yourself or is there some other way to send it? I had contacted Memorial Sloan-Kettering Cancer Center in NY sometime back and they said the only two options of consulting with an oncologist there are email or taking the patient to New york.

thanks,
Ruc

By linnea
Posted October 11, 2008 at 10:35 am
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Hello--I too have the EML4-ALK mutation and have been on the trial for a week and a half so far. Like Kevin I am enrolled at a hospital in Boston. I was dx in April of 2005 with stage I BAC and I had a lower left lobectomy followed by cisplatin and taxotere. My scans remained questionable but relatively stable until june of this year when a biopsy confirmed spread to both lungs and the mediastinal nodes. I did not possess the EGFR mutation, but two months of tarceva was tried any way and my response was negligible (although the side effects were certainly noteworthy). I would agree that the study drug is well tolerated and though I have no clinical evidence yet of response (just too early), I have noticed that my wind has improved and as well a rattle in my lungs has virtually disappeared. I am very hopeful that this drug will help me gain some ground in my fight against the cancer, and I encourage others to look into it (particularly if you are a never smoker, as that is an indication that you may have the mutation). Best of luck, Linnea

By RoRo
Posted October 11, 2008 at 7:17 am
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My husband's is poorly differentiated, also, but squamous cell. So far, like I said above, the treatments he has been getting were positive and, hopefully, next week, the Cyberknife will do its job!! We can only be positive and hope so.

He has been through hell for the past month. First he had esophaghitis from the radiation and could not eat and when that was almost over (2 weeks) he went in for the fiducial that had to be placed on the tumor in preparation for the Cyberknife and his lung collapsed. Was in the hospital five days and came home (hospital should never have let him leave) and I rushed him back to the ER of the V.A. hospital and his lung had collapsed a second time (I don't think it was properly inflated from the first time. He was in a trauma hospital then). Ended up being in the V.A. for another 9 days!! The only good thing through all of that is that he found out his tumor was responding to all those other treatments. He now feels wonderful and has even gained back five pounds since last Sat. when he was discharged. He now says, "I'm feeling great. Let's forget about any more treatments" (LOL).

Well, lots of good luck to you in the future. Thanks for the info. This site has been wonderful as we all can share and give info for other people that they may not know about.

Rose

By kfbrum
Posted October 10, 2008 at 1:53 pm
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Hi RoRo,

I have Non-Small Cell Large Cell Carcinoma. It was also diagnosed as being Non-Small Cell poorly differentiated Adenocarcinoma. We have discussed the cyber knife as a potential treatment, but because I was diagnosed at stage IIIa/b they want to get the tumors/nodules/lymphnodes involved reduced to a point where that would be an effective approach.

That is great about your husband. I would tell your team of doctors that you want his cell samples to be tested for not only EML4-ALK, but also KRAS and any other mutation. What I have learned and what my team of doctors are doing, involves staying a multitude of steps ahead of the current treatment so that there are many options. You are doing the right thing.

Best,
Kevin

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