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

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  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    #22
    stayingcalm said:

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

    keppra
    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
  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    #23
    mmt366 said:

    Staying calm,
    It isn't fair
    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

    trial drug
    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
    mmt366 Member Posts: 41
    #24
    sleepless in jersey said:

    trial drug
    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

    update
    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

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