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tested negative negative on mutation test, could some one explain?

sleepless in jersey
Posts: 185
Joined: Feb 2011

My Mom tested neg. on mutation test so they said she's not a canidate for the drug Tarceva. Does this mean she's not a canidate for any trial drugs at all? Could you explain this better to me please...

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

The Docs must have sent a tumor or fluid sample to a lab, where they tested it to see if she has the EGFR mutation in her cells. People with this mutation (most common in oriental women who have never smoked) are good candidates to take Tarceva. I don't think the doc should rule it out completely as some people have taken Tarceva without the mutation, and done well. Me, for instance. But there may be something else the doc can use first, instead of wasting time seeing if the tarceva might work.

There are plenty of other trial drugs, including one that may be better than Tarceva: Crizotinib. And because your mom does not have the EGFR mutation, she may very well have the ALK mutation, which you need to have to be in a Crizotinib trial. So, see if her doc also tested for ALK.

Best of luck, stayingcalm

sleepless in jersey
Posts: 185
Joined: Feb 2011

Thanks for explaining. Were you on Tarceva from the get go? Also how soon did they do your scans between tx? She finished WBR on 2/11 and going for round 2 chemo on MON. and they are not going to do any scans til April. Just so worried that a MRI should be done of the brain and not waiting til April since it was 6mm and multiple who knows if there gone after 10 rads. (she has head shaken quite a bit and if im not mistaken the only time we haven't seen it shake was for a period time after the brain surg.)
My Dad and I don't love the oncologist or the office, but Mom wants to stay so im always on guard and looking things up etc...
Thanks for your support, sleeplessinjersey

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I wasn't on Tarceva right away - my first line of treatment was Cisplatin/Etoposide, 2nd line was Taxotere, third line was a clinical trial drug that kept me stable a long time until we discovered the cancer had moved into my brain.
In general, the docs are supposed to wait 3 months between scans during treatment - if they feel (or just as importantly if YOU feel) that something is going on then they should scan sooner.

Your mom only had WBR and chemo, no surgery for the brain tumor?

stayingcalm

sleepless in jersey
Posts: 185
Joined: Feb 2011

hello stayingcalm,
She had a 6mm brain mass removed 1/6 the Doc wanted to start her on cisplatin/alimta/zameta, but when we went for 2nd opinion at sloan they suggested the carboplatin with everything else they went with the suggestion.
Were waiting for call from Doc, explained to the nurse practioner that Moms very dizzy, eye is watery, having head tremors and extremely tired this week. She seems to think its head swelling from WBR and may have to increase decadron to reduce brain swelling?
As her daughter its very hard to let the Doctors be Doctors I tell you!

Thanks for your help...sleeplessinjersy

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

It could very well be swelling, I recall being on Dexemethasone after surgery and during much of the radiation for that reason. I never could figure out how steroids could reduce brain swelling and yet make my face look like a chipmunks!

Let us know what the doctor says?

Best wishes to your mom and you,
stayingcalm

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi Stayingcalm~
Yes that is correct still waiting for call back?? However she did great yest. after round 2 not sleepy, had energy, not as dizzy or eye draining. So thats why they didn't call the Doc them selves.
I spoken to them last night that they really need to call them, that they cant wait for them to call you b/c they dont know what dose of decadron to take now (has 1, 2 and 4mg) had been on 2mg.

Thanks as always for your help.....Sleeplessinjersey

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hello Stayingcalm
Im so Happy to see your back on, like all of your friends out there...

I may have missed the update on how you are doing im sorry, would love to hear, please.

The Doctor never called Mom, so after 3 days of me haunting them to call they did and spoke with the nurse practitioner. She said it's the brain swelling and were keeping you on the Decadron and no longer weening you off at this time.

Whats interesting is her face never swelled, even the Docs said it would after surgery.

Thanks for all of your support...
Lots of thoughts your way with a speedy recovery :}

Sleepless in jersey

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

I am glad you are a contributor to this discussion board. You always post well-thought out responses and I appreciste you very much. I am negative for the EGFR mutation ad just signed the release today to be screened for ALK. Who knows if I have that mutation either, but it sure is worth looking at. Crizotinib seems to have some good promise. We will first see how well I respond to Alimta/Cisplatin and take it from there.

Deb, Thanks for being a part of this discussion group!

Warm Regards

John

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I hope you do well on the Alimta/Cisplatin combo, and maybe we'll both get into the Crizotinib trials =)

Take care of yourself, Deb

Kimmiann
Posts: 46
Joined: Feb 2011

I also tested negative for the EGFR. My second opinion (at Johns Hopkins) suggested tested for KRAS and if negative testing for ALK. My oncologist said not to bother now unless my cancer comes back down the road and then he would test for them. I am wondering if they don' test my tumor now if that same tumor will still be in a lab somewhere down the road and can be tested. I don't want to lose a chance to know all of the information I can.

My 2nd opinion also suggested Alimta/Cisplatin but I am going with Cisplatin/Taxotere and if I am too allergic will go to Alimta.

Kim

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi Kim~ When I spoke to the pathology at the Hospital they told me they keep the slides for I think 20 years (yes I was floored at that amt of time as well)so I dont think you have to worry about that.
Where do you have your cancer? My Mom is lung, spine, brain and pelvis.

At her 3rd tx in 3wks I will see if they will order 1 of those tests as well, just incase God for bid there is no change after scans at least we have info. on what next...

We have to stay positive...sleepless in jersey

Kimmiann
Posts: 46
Joined: Feb 2011

I can't believe they keep them for 20 years....but that is very good to know!

I have Stage 1B lung adenocarcinoma. I have to get chemo because it is possible I am 2B. My CT showed a 14mm and a 3mm nodule in my right lower lobe. When pathologist did report on my right lower lobe he indicated that a 3 mm area was part of the original tumor. When the oncologist went back and asked the pathologist "believed" it was part of the main tumor but could not be 100% certain it was not a seperate tumor.

I lost my dad 9 months ago to small cell lung cancer w/ mets liver, spine, ribs, pelvis, hips. It never hit his brain. I have to think he had something to do with my cancer being found so early. Every doc I have talked to said I am lucky that my primary sent me for a well woman chest xray since I am only 42. I had no symptoms and my primary thought a chest xray was a good idea since I smoked and dad had died of cancer.

mmt366
Posts: 33
Joined: Apr 2010

Hi Sleepless in Jersey,
My beautiful wife tested negative for a trial that would have allowed her to be on the Tarceva drug, however, further testing of the biopsy tissue showed she is a candidate for the ALK mutation and she will begin a trial using Cizotinib ( pf1066)this coming Tuesday 3/8/11. She was actually supposed to start last month but unfortunately her nslc had moved to her spine and became active in her brain once again. My wife's original diagonsis came back in August 09 and she has had 15 rounds of various chemo's, 2 sessions of Whole Brain Radiation ( 14 months apart) 1 directed radiaion of the brain.

Its been a long bumpy road to get to this point with many disappointments and letdowns, but she/we have endured and are more than eager to start the trial.
Sleepless, I'm sure your doctors are researching every possible treatment for you, but don't be afraid to ask them just the same. We began treatment at a local hospital but soon decided that we required one that specializes in cancer treatment, so we moved on and haven't looked back since. The difference in the level of care is like night and day, we went from a small team of doctors to a much larger team with Oncolgy staff dedicated to my wife ( or at least they make you feel that way).

I wish you luck and good health.
Stay strong "and Calm" in honor of Deb.

mmt

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi mmt366~Yes it is a very bumpy road, and I feel for you and everybody out there! We are very nervous for when its time for our scans....

When you spoke about local hospital for tx (did you go staight to your town hosp. for tx) we are going to a affiliation to our hosp. a center which is surgeons, oncologists, acupuncture a boutique-for wigs, rad. lotions etc...is that the type of center you went 1st?

I first tried getting Mom to the cancer center in philly however she was registered and ready til they called her on her cell and house # 9 times on that Fri. before she was to be there for Wed. and said forget it they must work on commission and she was disgusted! She will not go to Sloan for tx, but did go for 2nd opinion and Jersey changed one thing and everything was the same from there.

I have to unfortunately have to have my guard up and cant trust the Doc or office, they have messed up on 2 scripts, don't return calls and I asked them to order the mutation test so with that being said its so hard to stay strong, but I do in front of Mom.

You all are my therapy and im so Happy I found this thanks for all your HOPE!!
Sleepless

mmt366
Posts: 33
Joined: Apr 2010

Sleepless,
the first hospital we used would be considered large in most communities throughout the US, fortunately for us we live in Massachusetts and only a 25 minute drive to Boston and some of the best hospitals in the world. Our original oncology doctor who was not the least bit territorial, suggested we have an additional biopsy at another hospital in Boston so they could determine if my wife was a candidate for a targeted trial drug, specifically tarceva.The test came back negative for Tarceva, however after further testing they found she was a candidate for Crizotinib aka pf02341066. I am happy to report that we just completed the first day of treatment ..3 pills ( 250mg) in the am & the same at night ( 12 hr's apart).
This journey has gone on and carried us through 17 months so far, biopsies, radiation, chemo,more radiation, and now the trial. A year ago this May we went to Aruba and had a great time. Not sure if Aruba will be possible, but just having the time together means everything in the world to us. The Doctors and nurses at Mass General Hospital are exceptional beyond words and we owe this time them...and of course god.
Not sure if I mentioned that we lost our daughter to cancer ( multiple myeloma) Aug 09, my wife was dx'd 2 weeks later with nsclc stage IV so we never had a chance to stop, exhale and regroup. We just gripped tighter and stayed on the ride. I hope your ride is manageable and you are able to get off every now and again to enjoy life.
Take care
mmt

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

mmt,
I'm so sorry, you have had the worst of all possible trips to get here. I'm so glad you found your way to a trial drug that gives you hope like Crizotinib, if only it didn't have to start out this way! I wish you all good things, good luck, good scans, good results!
stayingcalm

mmt366
Posts: 33
Joined: Apr 2010

Staying calm,
It isn't fair thats for sure, but what is?
You know, it's supposed to be us, the parents who teach our children and provide them with the tools they need throughout life to deal with adversity. Our daughter evolved into a beautiful strong woman and she fought harder than anyone I had ever witnessed, that is until I joined this board and read all these amazing stories. We learned to push on and we dedicate each day to our daughter, we draw on her memory and the dignity she showed during her battle. I guess our daughter taught us something in the end.

Yesterdays scans showed a slight growth in the primary mass ( lower left lobe) but that was not unexpected as my wife had been off any lung treatment while they addressed the brain and spine tumors. The good news is we did begin the trial yesterday and so far no side effects ( i know it's only been 1 day, but what the heck..it's still good news!)

I have been following your battle since I joined the board and you remind me of our daughter. You too are an inspiration to us.
Thanks for the good thoughts and be well.
mmt

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi mmt366~ How is your beautiful wife doing so far on the trial drug. Its been what 13 days on the trial?

When is she sched. for scans?

My Mom had gone for tx 3 yesterday, I however could not go, but Dad went and I sent a list of quest. with him and one of the quest. was to see if they have or could test her for the ALK and they had seen the nurse practitioner (she had never heard of that test and would need to talk to the doc and get back) is that strange?

They are not doing any scans til after tx 4 they told her. So were have to hang tight a little longer.

Don't want to jinx Mom, but so far she has been such a trooper. Has not been sick and I take her out a lot and we do errands and Dad takes her out to dinner every weekend. I hope it stays like this for a long time...

Lots of thoughts your way...sleepless in jersey

mmt366
Posts: 33
Joined: Apr 2010

Hello again Sleepless,
We have been quite busy since my last email, my wife completed her 16 trial treatment today, and so far the Crizotinib side effects seem to be fatigue, nausea, swelling of the ankles and periodic vision issues, mostly with blurring so focusing requires her to blink multiple times before she is able to 'tune in". Of the 16 treatments ( 3 pills in am, 3 pills pm 150 mg each time)she has been nausuous 6 times, and only in the morning after taking the the pills and it takes between 1/2 hr - 1 hr for sickness to come on. No sickness after pm dose yet.

CT's will be done in a couple of weeks ( 4/14), then a brain MRI on 4/19. The CT's will continue every 6 weeks while on the trial.

We have taken advantage of the recent nice weather here in massachusetts to begin walking outdoors once again (with the help of a walker), also celebrated Saint Patricks last week, and the best news of all is that a friend of ours got us Field Box Seats for the Redsox - Yankees home opener at Fenway Park on April 8th.
We are enjoying these moments as they come because we know how fast everything can turn, my wife spent a majority of January in the hospital and during that time we prayed for better times. To be honest the Sox - Yankees game will be fun, but just seeing my wife have the ability to do it means everything.

remember to stay on those doctors, a past post from "Staying Calm" listed a link to a site that showed active trials, and there is a fair amountof information on the ALK Mutation/ Crizotinib trial. I will send it to you once I locate it.

Thanks for checking in with us, I look forward to hearing good things from your end.
Hope your Mom and dad have a restful night tonight.

mmt

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hello mmt366

He's really quite a charachter up there huh...
Im always saying if it wasn't for bad luck I would have no luck at all or doesn't he think I have enough charachter??

Im still trying to still have humor during this time and it sounds like you have not lost it. I hope me and my family stay as strong as you and yours!!

We had some bumps in the road, but hanging in there so far.

What I want to tell the world is that one of the drugs they put my mom on for a preventitive is "KEPPRA" its a anti seizure med. It caused her to be hospitalized about 3wks after being off of it. It's one of those drugs that have a rare side affects that attacts the pancrease and liver (made her turn extremely yellow and had to have a liver bx) the end result its time and a drip to flush the system after being in the hospital for 5 days....say no to KEPPRA!!

Mom goes to Onc in almost 2 wks so im going to request for them to do the ALK test, just in case after 3rd chemo that her scans are not what we want to hear that we are ready for what now. Thats not what were going to hear though, right!!

Your last forum was day 1 of pill how's it going, I hope great like the rest of us :}
Lots of thoughts your way...
Sleepless in jersey

mmt366
Posts: 33
Joined: Apr 2010

Sleepless,
we are in the process of completing day 3 of the trial/ Crizotinib and so far so good. A little nauseau but all manageable. We don't have an actual dr's appointment for another week. Longest stretch ( 2 weeks) without one in a very long time and we're not complaining, believe me! The three pills 2 x day ( 2 100mg & 1 50 mg) are going down without much trouble and my wifes appetite is picking up. Hoping and praying for continued improvement.

I will continue to post when I have information or if you have a question.

Have a good weekend.

mmt

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I'm taking Keppra =( Hope it's a VERY rare side effect!

sleepless in jersey
Posts: 185
Joined: Feb 2011

stayingcalm

The Docs have said to us they have only found 1 case that has been reported with the same situation as my Mom. I don't know who reports these problems if were suppose to or the Docs, but we didn't. Remember like I mentioned earlier it happened after she was off it for a couple of weeks, so God for bid this happens to anybody save yourself and the Doctor time its the keppra. "They says its rare" and im sure you will be fine!

I hope your doing better everyday!

Thoughts your way
sleepless in jersey

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