The new miracle drug for cancer (no sarcasm!)

stayingcalm
stayingcalm Member Posts: 650
I know you've all heard of Crizotinib by now - also known as PF1066, and now known as Xalkori as it is released by Pfizer for use in the general population, yayy! I'll be reminding my doc that he said I could do well on this drug despite not having the ALK mutation, since Tarceva worked so well for me (even though I didn't have the EGFR mutation, either.). Let's see if he can get my insurance to cover it, while I still HAVE insurance :) We should all be asking our docs about this drug, make them aware of it!
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Comments

  • NayPaul
    NayPaul Member Posts: 230
    yeah!
    My wife tested positive for the mutation last week after testing negative 5 months ago..... and yes.... this is a "miracle drug" that should not be withheld.
  • lekkerone
    lekkerone Member Posts: 199
    NayPaul said:

    yeah!
    My wife tested positive for the mutation last week after testing negative 5 months ago..... and yes.... this is a "miracle drug" that should not be withheld.

    Good news
    I am very pleased for everyone who needs it and hope you all can get it.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Crizotinib

    I read a lot of good things about this stuff and hope your insurance company approves it for you. I was not aware the FDA already approved it for people with Lung cancer

    All the best
    Hondo
  • persion
    persion Member Posts: 2
    I am very worried over my
    I am very worried over my friend. I feel the subject staying calm is very appropriate.
    She has stage 4 non small cell carcinoma of the lungs. Tarceva worked for about 8 months.2 different chemos and now to try for a experimental drug (but which one) ?
    At this time she is doing great and has only shortness of breath.Vital signs good, no fever, pneumonia one time.
    I am very anxious to what others are using that gives more extension for life and quality.I wish for a miracle and there is always that hope as we need more miracles in our lifetime.If you have any advise to give or any thing that could help please email me. I wish you , yourself the best and hope to find on here inspiration.
  • z
    z Member Posts: 1,411 Member
    persion said:

    I am very worried over my
    I am very worried over my friend. I feel the subject staying calm is very appropriate.
    She has stage 4 non small cell carcinoma of the lungs. Tarceva worked for about 8 months.2 different chemos and now to try for a experimental drug (but which one) ?
    At this time she is doing great and has only shortness of breath.Vital signs good, no fever, pneumonia one time.
    I am very anxious to what others are using that gives more extension for life and quality.I wish for a miracle and there is always that hope as we need more miracles in our lifetime.If you have any advise to give or any thing that could help please email me. I wish you , yourself the best and hope to find on here inspiration.

    New
    I certainly want all that needs this medicine to get it and have their insurance company approve it. Chemo is just as expensive and actually even more expensive, so it really shouldn't be an issue. I read where it would be a 100 dollar co pay if the insurance accepts it.
  • NayPaul
    NayPaul Member Posts: 230
    NayPaul said:

    yeah!
    My wife tested positive for the mutation last week after testing negative 5 months ago..... and yes.... this is a "miracle drug" that should not be withheld.

    started today
    My wife started xalkori/crizotinib today. She was enrolled in the study last Thursday and pfizer closed it to new entrants after the fda approval. Her health has declined rapidly the last 6 weeks, new scans indicated growth and new growths in many places.... enough that there is no way she can walk her marathon.... but she is looking at another marathon in november assuming crizotinib works. I never doubt my wifes dedication.
  • lekkerone
    lekkerone Member Posts: 199
    NayPaul said:

    started today
    My wife started xalkori/crizotinib today. She was enrolled in the study last Thursday and pfizer closed it to new entrants after the fda approval. Her health has declined rapidly the last 6 weeks, new scans indicated growth and new growths in many places.... enough that there is no way she can walk her marathon.... but she is looking at another marathon in november assuming crizotinib works. I never doubt my wifes dedication.

    NayPaul
    My very best to your wife as she starts on this new drug. I don't doubt you two for a minute as you are an amazing pair. Diane
  • Glenna M
    Glenna M Member Posts: 1,576
    lekkerone said:

    NayPaul
    My very best to your wife as she starts on this new drug. I don't doubt you two for a minute as you are an amazing pair. Diane

    Best of luck
    Wishing your wife the best of luck with the new drug and I'll be praying that she can walk the marathon in November. She is such an incredible woman!!!
  • JohnBinDC
    JohnBinDC Member Posts: 91
    Crizotinib
    Staying Calm,

    Great news! I do bot have the ALK gene, but it is good to know that may not be a necessity for the drug to be effective. I have been through several chemo "cocktails" with none of them having too mch success. (well, no shrinkage at any rate) Finished 33 radiation treatments about a mionth ago and now have a couple of new unknown "spots" on my lung.

    So, I'll keep checking on other possibilities for treatment and keep moving forward. As I heard on this board (I believe from Joe), my job is to stay alive long enough to have a treatment developed that is successful. I believe that day is coming!

    Great to hear from you and I wish you well always.


    Regards
    John
  • grannylove
    grannylove Member Posts: 183
    NayPaul said:

    started today
    My wife started xalkori/crizotinib today. She was enrolled in the study last Thursday and pfizer closed it to new entrants after the fda approval. Her health has declined rapidly the last 6 weeks, new scans indicated growth and new growths in many places.... enough that there is no way she can walk her marathon.... but she is looking at another marathon in november assuming crizotinib works. I never doubt my wifes dedication.

    Thoughts and prayers!!
    NayPaul,
    Lifting you both up in thought and prayers! Looking for positive outcomes with crizotinib so that you and your wife will have a lifetime marathon. Stay strong and know we are here. God bless.
    Cheryl
  • catcon49
    catcon49 Member Posts: 398
    JohnBinDC said:

    Crizotinib
    Staying Calm,

    Great news! I do bot have the ALK gene, but it is good to know that may not be a necessity for the drug to be effective. I have been through several chemo "cocktails" with none of them having too mch success. (well, no shrinkage at any rate) Finished 33 radiation treatments about a mionth ago and now have a couple of new unknown "spots" on my lung.

    So, I'll keep checking on other possibilities for treatment and keep moving forward. As I heard on this board (I believe from Joe), my job is to stay alive long enough to have a treatment developed that is successful. I believe that day is coming!

    Great to hear from you and I wish you well always.


    Regards
    John

    YEAH

    So happy that they have come up with something to help you stayingcalm. I hope it works as well as the last one.

    Stay Strong.

    c
  • NayPaul
    NayPaul Member Posts: 230

    Thoughts and prayers!!
    NayPaul,
    Lifting you both up in thought and prayers! Looking for positive outcomes with crizotinib so that you and your wife will have a lifetime marathon. Stay strong and know we are here. God bless.
    Cheryl

    Thank you.
    It's been an up and down week. She was pretty much out of commission the first few days of the drug. Then Monday, she did very well. We went to the zoo, she was up all day etc. But starting yesterday afternoon she has faultered. She is having trouble keeping things down, so I have to plan the meds at the right time. I'm going to try and take her in tommorrow to get some fluids. She is losing a lot of weight and seems dehydrated. I do believe Crizotinib is her best chance so I want to keep getting this into her.

    Thanks again.
  • stayingcalm
    stayingcalm Member Posts: 650
    catcon49 said:

    YEAH

    So happy that they have come up with something to help you stayingcalm. I hope it works as well as the last one.

    Stay Strong.

    c

    Catcon
    I haven't yet talked to my doc about trying to get on Xalkori...but I'm still hopeful!
    stayingcalm
  • hopefullma
    hopefullma Member Posts: 13
    persion said:

    I am very worried over my
    I am very worried over my friend. I feel the subject staying calm is very appropriate.
    She has stage 4 non small cell carcinoma of the lungs. Tarceva worked for about 8 months.2 different chemos and now to try for a experimental drug (but which one) ?
    At this time she is doing great and has only shortness of breath.Vital signs good, no fever, pneumonia one time.
    I am very anxious to what others are using that gives more extension for life and quality.I wish for a miracle and there is always that hope as we need more miracles in our lifetime.If you have any advise to give or any thing that could help please email me. I wish you , yourself the best and hope to find on here inspiration.

    i am on tarceva now did it
    i am on tarceva now did it work pretty good then? the side affects are kicking me.
  • stayingcalm
    stayingcalm Member Posts: 650

    i am on tarceva now did it
    i am on tarceva now did it work pretty good then? the side affects are kicking me.

    hopefullma
    If the side effects are really too much for you, you can ask your doc if he would lower the dosage for you - that's what I did. It was lowered to 100mg, every other day (or maybe three days on and one day off, I don't remember), and eventually began taking 100mg every day. Hopefully your doc is willing to be flexible :)

    Best of luck, stayingcalm
  • NayPaul
    NayPaul Member Posts: 230
    NayPaul said:

    Thank you.
    It's been an up and down week. She was pretty much out of commission the first few days of the drug. Then Monday, she did very well. We went to the zoo, she was up all day etc. But starting yesterday afternoon she has faultered. She is having trouble keeping things down, so I have to plan the meds at the right time. I'm going to try and take her in tommorrow to get some fluids. She is losing a lot of weight and seems dehydrated. I do believe Crizotinib is her best chance so I want to keep getting this into her.

    Thanks again.

    some improvement
    Over the last week, my wife as made slow but steady progress. We cut back on her morphine patch last Saturday, and will likely end its uuse altogother tomorrow. She is now taking no other pain meds. She as also cut back on her nausea meds. She still has trouble eating, bt is drinking ensure and water. She is also awake about half the day. She wants to try walking again by the end of the week. I think ending the morphine will give her much more energy.

    ;)
  • mamacita5
    mamacita5 Member Posts: 254
    NayPaul said:

    some improvement
    Over the last week, my wife as made slow but steady progress. We cut back on her morphine patch last Saturday, and will likely end its uuse altogother tomorrow. She is now taking no other pain meds. She as also cut back on her nausea meds. She still has trouble eating, bt is drinking ensure and water. She is also awake about half the day. She wants to try walking again by the end of the week. I think ending the morphine will give her much more energy.

    ;)

    That sounds so great! I am
    That sounds so great! I am sure she can't wait to start walking again! PRAYERS flying your way.
  • mamacita5
    mamacita5 Member Posts: 254

    Catcon
    I haven't yet talked to my doc about trying to get on Xalkori...but I'm still hopeful!
    stayingcalm

    Sending Positive Vibes
    Sending positive vibes your way Deb. Let us know what the doc says. <3
  • catcon49
    catcon49 Member Posts: 398
    mamacita5 said:

    Sending Positive Vibes
    Sending positive vibes your way Deb. Let us know what the doc says. <3</p>

    I'm sending positive vibes
    I'm sending positive vibes also.
  • lekkerone
    lekkerone Member Posts: 199
    NayPaul said:

    some improvement
    Over the last week, my wife as made slow but steady progress. We cut back on her morphine patch last Saturday, and will likely end its uuse altogother tomorrow. She is now taking no other pain meds. She as also cut back on her nausea meds. She still has trouble eating, bt is drinking ensure and water. She is also awake about half the day. She wants to try walking again by the end of the week. I think ending the morphine will give her much more energy.

    ;)

    Sounds Good
    That sounds more encouraging Paul. It made my heart sing just reading your last post. God bless you both and know that we all have your back!!