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06-01-2008, 04:04 PM
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Hi Everyone,
Just wanted to drop a note - in case anyone wanted to know  I am currently in Baltimore....I will be meeting with the doctors at Johns Hopkins tomorrow (Monday). I will meet with the neuros, hematologists, and oncologists to discuss HiCy/Revimmune as a treatment option for me. I am very nervous....but also very excited. Who'd have thought I'd ever go somewhere to beg someone to give me high dose chemotherapy! LOL I'm exhausted - having traveled the red-eye from California last night. Oh, and I'm in the middle of a gnarly exacerbation and I traveled alone. I do not recommend this! Actually, I am in awe of all people who are able to travel and function disabled....I am not cut out for it. Gosh, they need to cure me!  My nerves are flaring - in every which way - thankfully, I have tapered off of that ridiculously high dose of prednisone pills that I was one (did 5 days at 1000mg/day and 2 days at 500 and 2 at 250). I'm less of a wreck since they stopped yesterday. Wow. Staying away from those FOREVER. Bring on the IVSM ANYTIME! Anyhow, I'm carefully, graciously, thankfully, and thoughtfully accepting any good positive thoughts that anyone would like to send to me. Thanks, ~Keri |
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06-01-2008, 04:14 PM
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Senior Member
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Keri
You are in my thoughts and prayers. I wish you much success and a cure with this treatment. You are a courageous woman and have given me hope with your strength. Good luck tomorrow at JH and know that good and positive energy surrrounds  you.
__________________
-- Beth RRMS -dx 1997 Never doubt that a small group of thoughtfully committed citizens can change the world; indeed, it's the only thing that ever has. - Margaret Mead Breathe In HOPE, Breathe Out DETERMINATION |
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06-01-2008, 06:23 PM
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Keri,
You sound so excited and I'm happy for you! Be careful traveling alone and having an exacerbation  Keep us updated on how everything goes.. you're in my thoughts and prayers that everything works out for you Monique |
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06-02-2008, 03:07 PM
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Hi Keri, I've been thinking about you lately and the whole RevImmune process. It must be exciting and simultaneously scary too. I'm sorry you are doing this on your own right now. I'm impressed by your tenacity and courage to get this treatment because you feel it is the best thing for you. Just know that people have you in their thoughts. I'm sending you a BIG hug.
And thank god you are off that awful oral prednisone!! Please let us know how the doc. consultation goes.
__________________
On Tysabri and love it. . |
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06-02-2008, 05:08 PM
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Good luck Keri! I hope all goes well for you. The fact that you are doing this alone may be one of the reasons you are being seen. You have a great deal of determination, despite how sick you have just been. That is resolve.
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06-02-2008, 05:13 PM
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Grand Magnate
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Well, Keri? Any news? I'm keeping my fingers crossed for you!
__________________
. |
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06-02-2008, 05:13 PM
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Hi Keri,
Just wanted to tell you I think you're very brave. Best of luck to you with your meeting with the doctors which I'm sure has happened by now. Let us know how everything goes. You'll be in my prayers. |
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06-02-2008, 09:09 PM
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Member
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Hi everyone,
Just wanted to drop a quick note - everything went VERY well today with the doctors at Hopkins. I am VERY excited about HiCy/Revimmune.....and apparently I'm a great candidate for it! The doctors (and everyone really) were just fantastic! And I finally met a neurologist who has an actual personality!  It was a VERY long day (arriving there by 10:30, not done till 5). I actually got there late - well - I was way early - and then realized I left the CDs of my MRIs in the hotel! Eeeek! I totally panicked - I was supposed to be there by 9:30 for a 10am appointment. I was just driving in the car hysterically crying, rushing to get the CDs. But everyone was just fantastic. (And hey, I brought them some groovy See's Candies from CA. Bribery never hurts, right??) I cried a lot today in between appointments and stuff....very emotional. Though, I did not cry when they took 17 vials of blood from me!  I head home tomorrow - need to leave hotel by 5:30am....and I'm just beat right now. I'm not sure I ever adjusted my "clock" to east coast time. I've pretty much made up my mind that I'm going to go forward with this.....I know I need to "think" some more....though, my plans are falling into place as of now... Excited and petrified....like when I jumped out of a plane two years ago?  There's a lot to plan, as I plan on coming back to Hopkins within 3 weeks or so!~Keri |
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| "Thanks for this!" says: | Desinie (06-02-2008), mom23angels (06-03-2008), MSacorn (06-03-2008), PolarExpress (06-02-2008), SallyC (06-03-2008), starfish (06-03-2008), Victor H (06-03-2008), weegot5kiz (06-03-2008) |
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06-03-2008, 05:29 AM
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Glad all went well. Hope you get some rest on the flight home!
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06-03-2008, 08:04 AM
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Magnate
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Quote:
 No, no, no - jumping out of a plane is a complete waste of a good plane  Keri, it appears you have already made up your mind and I hope everything goes well and you get the results your looking for. Keep us updated.....please.
__________________
Dx RRMS 1984 |
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