The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 270. Re: Karen...sct
    pinkydo123 Registered Users
    Currently Being Moderated

    Thats positive news that you don't have flt3. Karen can you push them to use Clofarabine?? You don't have alot of time at this point for them to not get this right. Please ask them about it. It has been proven to be very effective for refractory AML.

  • 271. Re: Karen...sct
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Karen,

     

    Well, I agree with Pinky that the absence of the flt3 is good news.  The only thing I can tell you is I would go with your gut on this one - I don't think its beyond reason to get on a plane and show up in Seattle for a consult - I was impressed with those folks and the thoroughness of the doctor at my transplant consult over there.  I felt like he took just as much time as I needed to make sure I really understood what my options were and that all my questions were answered.  On the other hand, if you feel confident in your docs there, that might be the thing to do.

     

    How are you feeling physically?  I was hugely neutropenic when I did my consult at the Hutch, but still glad I made the effort and thought it was very worthwhile to have gone.

     

    You're in my thoughts and prayers -

     

    - WBF

     

     

  • 272. Re: Karen...sct
    pamd Registered Users
    Currently Being Moderated

    Karen, I know I'm coming in with a late response here when you have huge decisions to make and almost no time to make them in, but if I could afford the cost, I believe I would get to the Hutch for an in person consult if I could. Only because your doctor may be trying everything he has in his known arsenal of options, but they've got a bigger, maybe more state-of-the-art arsenal there. I know you do not want to give up, and I do not blame you a bit for wanting to exhaust every option. I also know that you are probably not feeling great and going to the Hutch is not only a big expense but a huge shift in gears. Only you know if you feel this would be better than a phone call consult, where they might say come anyway, or working with your present hospital and doctor. I will be praying for you, Karen, you have all our support no matter what you decide to do.

     

    ((Hugs))

    Pam

  • 273. Re: Karen...sct
    karen2009 Registered Users
    Currently Being Moderated

    thanks, all of you. Your advice really has huge impact on my decision. All I hear on here is good things about the Hutch, and I just keep thinking I might hear something thats working there other than regular chemo protocol that doesnt seem to be making it go away. But if I don't at least go and see and hear it for myself I won't know. I may like the docs there, what they have to say and stay, but if I do not  not go and check it out I won't know. I'm feeling ok, I am getting blood and platelets when needed. My doc is setting up the appt with Dr. Estey today, however they are 3 hrs behind us in time difference so I am hanging in limbo as to when to make flight tickets for depending on if he can see me tomorrow or have to wait till Mon. In which case we'd be flying out tonight or tomorrow night. I am scheduled to get blood checked here tomorrow so may need to get blood and plates here tomorrow then fly out tomorrow night. So I sit here and wait, and then I thought I also need to call my ins and make sure they will pay for treatment in Seattle. I have great lakes ins. I would think the doc here would not have given me the option had it not been covered by my ins but I need to doublecheck. I am overwhelmed at this point and trying to hold it together. It also looks like one way plane tickets run about the same as both ways tickets which I thought was odd but that was looking online. I need to call airlines directly to get them I guess.

  • 274. Re: Karen...sct
    pinkydo123 Registered Users
    Currently Being Moderated

    Call this number Karen it's called Angel Flight and they can maybe help you out with emergency flight options to Seattle especially with the help of your Doctor. The number is 1-800-549-9980. Or Mercy Medical Airlift 1-800-296-1217

  • 275. Re: Karen...sct
    karen2009 Registered Users
    Currently Being Moderated

    my sister and my daughter was going to go with me. My fiance is now trying to get a week off of work so he can go too. There will be 4 of us going. Is Angel Flight something a  certain airline has or do they make sales through alot of airlines? How does that work?

  • 276. Re: Karen...sct
    karen2009 Registered Users
    Currently Being Moderated

    I just got thru to my ins and it covers emergency and urgent care only out of state. Seattle would have to submit to get authorization to be covered for anything there which could take 12-72 hrs to get. And that is if they authorize it. They for some reason did not cover U of M in MI here where I went first, and they sent me to Karmanos in MI cause that's what my ins. covered. So I'm doubting that it will cover Seattle Washington so looks like I don't have a choice anymore. I will have to stay here and be treated at Karmanos. I don't have the time to wait for authorizations and I can't fly all the way accross the US if it might mot even be covered. Wish me luck here.

  • 277. Re: Karen...sct
    pinkydo123 Registered Users
    Currently Being Moderated

    Wishing you all the luck you need Karen......(((Hugs))))

  • 278. Re: Karen...sct
    karen2009 Registered Users
    Currently Being Moderated

    Oh Pinky, I'm so confused on what to do. My fiance' is saying they will authorize it. But I don't know if they will. I really don't know what to do.

  • 279. Re: Karen...sct
    pinkydo123 Registered Users
    Currently Being Moderated

    As Pam said before Karen Seattle has alot more in the arsenal. I'm sorry you have to make such a choice with so little time to make it Karen, the only thing I can say  is go with your gut-feeling.

  • 280. Re: Karen...sct
    texgma Registered Users
    Currently Being Moderated

    I agree with everyone that you should go with your gut-feeling.  You said your boyfriend said your insurance would cover it.  What was the difference between what he read and what the insurance people told you?  If nothing else, a phone consult would set my mind at ease.  But I would sure double check the information you and your boyfriend got, because he may have found something to help get thru the loop.

  • 281. Re: Karen...sct
    mamawarrior Registered Users
    Currently Being Moderated

    Karen, go. I am sure there must be people involved behind the scenes that you are not aware of. The insurance dept at seattle will deal with your insurance co. If they have something to offer you that no one else has, they should be able to get it to fly. You need to go and just get peace of mind about what your options are. Sometimes it just takes some creative writing by the transplant center, and your oncologist/transplant docs.

     

     

     

  • 282. Re: Karen...sct
    karen2009 Registered Users
    Currently Being Moderated

    Unfortuneately I don't think I have the time. I just got platelets yesterday and now today have lots of spots already on my legs. Yhis concerns me., With the unknown ins questions and the feeling I need some kind of treatment quick I think I  have decided to start the MEC chemo treatmant here on Mon. and will call the Karmanos doc and have him cancel appt if already made in Seattle. My family is also worried about me flying since my blood pressure is so low although my doc did not say that would be a problem, but I didn't ask him either. Maybe I would qualify for another trial if I get the MEC and it puts me in remission and would have more time to check out, or maybe not. I don't know. I feel like my thoughts are yo yo-ing up and down but I think I have to stay put here and get in right away on Mon.Tomorrow I'll get more blood and plates if needed. Thank you again all of you. So much.

  • 283. Re: Karen...sct
    danswife Registered Users
    Currently Being Moderated

    Karen,

     

    I've been following your journey.  It seems to me that you are making the best choice for now.  Right now, there's a sense of urgency.  Staying locally with a definate insurance approval and a start date of Monday means no time wasted.  When MEC puts you in remission there may be another trial that you are eligible for.  Your flt3 negative result is great!  That's one less obstacle to overcome.  I know platelet transfusions don't last very long.  Thankfully, we live in a modern society where they are immediately available!  Take care over the weekend and I'll be thinking about you Monday.

     

    Darcy

  • 284. Re: Karen...sct
    mamawarrior Registered Users
    Currently Being Moderated

    I understand that sense of urgency karen.

     

    Is MEC a new chemo regimen for you? 

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