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Postby Faireyez » Tue Apr 01, 2008 9:39 am

Hello to everyone. I hope this little note finds everyone well and in good spirits.
My Blessings to all!

Where do I begin???
As you know I was scheduled for PFD on January 30th. Due to the pre-op test everything went on halt because of my blood tests, this showed high elevation of platelets and WB.

I've been through so many tests. 2 Bone Marrow Biopsies :oops: , one bone aspiration :cry: and tons of blood work. It was confirmed that I have something called Essential Thrombocynthemia with Jak2 Mutation and possible Meylofibrosis.

Essential Thrombocynthimia is cause by the Jak2 mutation in which this sends a message to permanently switch on a signal to make platelets, but these new platelets are mutated and do not work properly.

This is one of three Myloproliferaitives diseases and blood cancers which can potentially convert to the worst type of Leukemia (AML).

I just got back from New York. I was referred to Memorial Sloan Kettering Cancer Center as a Stem Cell Transplant candidate. Unfortunately, the only possible cure is a Stem Cell Transplant (Bone Marrow Transplant).

I returned with hopes. I need to wait for the results of a new bone marrow aspiration to show fibrosis. Fibrosis in the bone marrow just means the bone marrow is being replaced with fibro tissue and is burning out.

If this test is clear then I will not need a transplant at this moment. They will need to see what is the best course of treatment for ET and that means just watching, and seeing how long will by blood levels remain stable or if there is any sing of converting to Myelofibrosis or AML.

The Dr. told me the course of ET is uncertain and that usually my current good cells will die and be replaced with these new mutated cells eventually lowering my hemoglobin and platelets and in the future needed transfusions of both.

I’m currently on a medication called Agrylin (anagrelide) to lower my platelets.

Is so frustrating, I still have no clearance for my surgery, is too risky now. But CM is still wrecking havoc with the headaches and now I’m starting to feel weaker, my legs are hurting more than ever limiting my walking and I get so tired.

I don’t even know what to think at this point. I don’t know which symptoms to attribute to Chiari and which to this.

I know that with Myelofibrosis there is a significant bone pain but this is still to be confirmed. I know that bone pain, leg pain is also part of Chiari as well.
I hate that I’m stuck in this waiting game and right now there is nothing being done about how I feel. I honestly thing the Chiari is still my major problems and symptoms. But I don’t see a surgery nor any type of relief soon.

It feels like the dr. need to wait for me to hit rock bottom in both of these illness for something to be done and that is so frustrating right now.

Thanks for taking the time to read my little journey here with this.

My best to all in your surgery, recovery and keep your spirits high, we will one day find the light at the end of the tunnel we are currently on.

Blessings, Shiara
Love & Blessings, Shiara~
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Postby Ryzing » Tue Apr 01, 2008 10:07 am

Hi Shiara!

I first want to tell you that I love your signature blurb....

I want you to know I will be praying you get the results & answers you desire. Sorry to hear you've had such a rough time lately. Please know we all are thinking about you- and hoping things go your way soon.

Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby georgiagal » Tue Apr 01, 2008 11:40 am

You've had a rough and long couple of months. May you soon get the answers you need and deserve.

((((((hugs)))))))) and keep letting us know how things are developing.

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Postby kiminfla » Tue Apr 01, 2008 1:00 pm

Shiara, My heart breaks for all you're going through. I understand the dr's hesitancy to do the pfd with all else you have going on but I know that doesn't make you feel any better -- sure wish I could.

One of my close friends has an appt with an oncologist Thursday as she had some blood work due to phantom smells, dizziness, hip pain, and episodes of feeling "out of it" although she doesn't pass out. When they did her bloodwork, they found high platelets and she is going to the next appt/consult and the dr wrote "thrombocythemia" on her paperwork.

Sounds like she may be dealing with the same thing or similar as you although she doesn't have CM. I'll definitely try to put you two in touch if that turns out to be the case because I know (from this board) that being able to relate to someone who truly understands is so valuable.

You're in my prayers! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby Janice » Tue Apr 01, 2008 2:49 pm

Hi Shiara,

You remain in my thoughts and prayers. I know it can be so very hard to maintain high spirits with all you're facing but I do pray GOD provides the love and comfort you need while waiting on surgery.

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby cash71 » Tue Apr 01, 2008 7:37 pm

HI Shiari thank you for taking the time to come by and update us. I have wondered how you are doing. I am so sorry to hear about your recent struggles. I hope and pray that things will become clear and you can get a real treatment plan developed so that you can have the PFD you need. Once again I am reminded that my struggles are minor!

You are in my prayers.


Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Sandy » Tue Apr 01, 2008 10:33 pm

Hi Shiara,

My dh has MPD, polycythemia vera. Hang in there. You'll be in my prayers too. I'm so sorry. Hopefully everything will turn for the better.

It is really good to see you here. Don't be a stranger, ok?:

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Postby Vagreeneys » Wed Apr 02, 2008 9:40 am

Hello Shiara,

I hope all does go well for you. I will keep you in my prayers.

SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
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Postby birdlover3 » Wed Apr 02, 2008 11:00 am

Thank you for letting us know how you’re doing. I cannot imagine what you’re going through, but thankfully, God does. I’ll keep praying for you.
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Postby Faireyez » Wed Apr 02, 2008 2:39 pm

I want to thank you all for the warmth and great support everyone has shown and giving me during this time. You are all great group of people!
God Bless you all :)

It’s not easy to keep an uplifting spirit while you are just hanging and just plain waiting and waiting and waiting.
I’ve been so anxious these past few days that I don’t even want to carry my cell phone anymore. I leave it with my DH because I don’t want to just sit and wait for the Dr’s call. I keep praying and so many people are praying that it overwhelms me with love.

While in NY I visited my old church and my mom’s friend church and I could not believe the prayers and good thoughts and blessing everyone send out to me.

While I was standing at the altar the pastor asked everyone to get up and come up and reach their hands towards me as she prayed, I just fell in tears.
I could not believe my eyes… Everyone stood up reaching towards me, people I didn’t even know where praying and sending blessings towards me and it hit me… HOW SMALL I AM.

I felt so small in the middle of everyone. I couldn’t believe that it was all for me. I questioned if I deserved so much love. It hit me just then that we are all dependant on each other, that I am nothing with out love and that love is the answer to everything.

This was such a powerful event that I just wanted to share it with you. We need to pray for everyone, love and bless everyone. You never know if a blessing is in that one prayer you sent out for someone.

I keep everyone here in my prayers and hope that the angels grab at least one if not all of those prayers and lifts it directly to the Lord presence and blesses everyone here.

Love & Blessings, Shiara
Love & Blessings, Shiara~
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