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KayS
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PostSubject: Re: From puter of mimTN   November 12th 2010, 9:46 pm

Alice Jane, you have a wonderful attitude, it is a blessing to have you on this board. Continued prayers for you sweetie.
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PostSubject: Re: From puter of mimTN   November 12th 2010, 9:49 pm

Mim - big box of books going out tomorrow!
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PostSubject: Re: From puter of mimTN   November 12th 2010, 10:04 pm

Thank you Memphy, you are wonderful and it means so much to me.

KayS, thank you, but I can't take credit for it, I came with it. The funny thing is some of the traits that used to get me in so much trouble as a kid are the ones that are serving me best now.
I can remember staring my Mama down and saying "I get to say what I think" or "that is not right and I will not shut up about it" And I always stood up to bully's, mine and others. lol, The bully's were scared of me. I would not back down. And I was as stubborn as they day was long. etc. I am so glad I kept all that and my spirit never got broken, no matter how hard some tried.
To me this leukemia is just another damn bully.
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PostSubject: Re: From puter of mimTN   November 12th 2010, 10:09 pm

mimTN wrote:
Thank you Memphy, you are wonderful and it means so much to me.

KayS, thank you, but I can't take credit for it, I came with it. The funny thing is some of the traits that used to get me in so much trouble as a kid are the ones that are serving me best now.
I can remember staring my Mama down and saying "I get to say what I think" or "that is not right and I will not shut up about it" And I always stood up to bully's, mine and others. lol, The bully's were scared of me. I would not back down. And I was as stubborn as they day was long. etc. I am so glad I kept all that and my spirit never got broken, no matter how hard some tried.
To me this leukemia is just another damn bully.

That's a great way to think about it Mim. You will kick that bully's ass.

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PostSubject: Re: From puter of mimTN   November 13th 2010, 8:39 am

What a wonderful attitude!! Stay strong and stubborn! God Bless!!
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PostSubject: Re: From puter of mimTN   November 22nd 2010, 4:00 pm

An update.

1. I am eating again, Yeah!
2. I think the fluid is leaving my left lung on it's own, now that I have been off the meds for a month.

Also, this is the part I did not tell. When I was in hospital I realized I had to change Drs. For a number of reasons that was hard. When I got home from hospital I was sicker than when I went in and in pain. I was so weak and sick I did not know how I would do all I needed to do. I could barely get to bathroom. My daughter and grands came through for me and took care of me so that all I had to do was get to Dr. appointments. And day by day, step by step I did what I had to.

Now, I have;
1. A new oncologist, she is with University of TN group, which is major teaching hospital and has access to all their contacts, etc. She took lots of my blood and is having it testing for all manner of genetics at specialized labs. When they get all my records and the genetic testing back that should tell them exactly what meds or combination of meds I need to be on. The other good thing is she comes to an office only 3 miles from my apartment once a week. No more 60 mile round trips to see Dr.
2. A great GI specialist, He is why I can now eat and will see him in Dec to start treatment on IBS which he suspects has caused a lot of my problems and is made worse by leukemia and meds.
3. I have a Nurse Practitioner, whose office is only 6 miles from my apartment. She said her job is to treat the day to day stuff and help me find any specialist I may need and to keep everyone informed about changes in treatment. BUT her biggest job is to be my medical advocate and make sure I know what is going on.

Also the oncologist told me it may take 2-3 weeks to get back all the tests But we are in a marathon and not a sprint and to be patient so we have any and all info before we make decisions. I am good with that attitude.
Also all the above Drs are aware and keeping each other updated, They all say, "we and you are a team"

The hospital stay was scary, and when I go back on meds the fluid may come back and I may have to have the left lung sealed, but it will not be like last time. This time I will know what is happening and why. Also while I was in hospital and lots of things coming at me I had some angels on my side. Some at hospital who saw what was happening and went above and beyond to help me.

But, some DUTS where helping me too. Each in their own way, some with info about how stuff worked and what to do and some to keep me from freaking out too much when I realized how bad it was and some with other info and moral support. You know who you are, and I am so grateful. Thank you. I really don't know what I would have done without you. I owe you more than I can ever repay.
I love you guys so much.

Kiss of Love
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PostSubject: Re: From puter of mimTN   November 22nd 2010, 4:49 pm

This is all wonderful news Mim! I'm so happy you found a new Dr. that you are comfortable with and especially glad to hear about the Nurse Practitioner and the new GI specialist. It sounds like your new "team" is just what you needed to make things less complicated. We are always here for you missy! cheek kiss

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PostSubject: Re: From puter of mimTN   November 22nd 2010, 6:13 pm

Good news Mim. I'm really happy about the Nurse Practitioner, she sounds like just the kind of help someone would need.

Hug wrap up in arms
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PostSubject: Re: From puter of mimTN   November 22nd 2010, 8:22 pm

Supper News mimsy! cheek kiss
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PostSubject: Re: From puter of mimTN   November 22nd 2010, 8:23 pm

Great news mim. Smile

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PostSubject: Re: From puter of mimTN   November 22nd 2010, 9:06 pm

Great news Mim

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PostSubject: Re: From puter of mimTN   November 22nd 2010, 9:19 pm

Awesome news Mim!
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PostSubject: Re: From puter of mimTN   December 28th 2010, 12:34 am

yep, me again.
Today I started on the new meds. I have gone to support site for this stuff and have learned that the med I am on, Tasigna, is the least likely to cause fluid on lungs. And there are other good things about it. Also on that site are people who have had this for 10 or more years and they know lots of stuff and are helping me.
If I had been reading there I would have known to get 2nd opinion long time ago. I was looking back over the last year. A lot of that stuff I should not have had to go through. Live and learn. lol, and I intend to do just that, both of them!

the not so good, is the Dr. scared me about the side effects and if I can't take this med. BUT, on the site I learned some more good meds are in clinical trials so that is option. I found that out on that site. When I picked up the meds, I was scared and was crying on way home. I posted on the site about it and people came back with info about meds in development.

Funny thing about me and the new med;
I can't eat for one hour before I take it or for 2 hrs after I take it. For those 3 hours all I can think of is eating. I am just perverse like that, lol. I am not hungry, but I can't eat so I want to. yep, crazy. lol

Anyway, say prayers that this med keeps me in remission and no bad side effects.

I am really torn about this. A part of me wishes I had never taken you all on this crazy ride with me. I do feel bad about that, a lot. I read some of my posts, they are all over the place, scared to death one min. and happy and hopeful the next.
I am sorry for worrying y'all but grateful for your support.
What can I say? Cancer is a crazy making ride. Thanks for keeping me company on it.

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PostSubject: Re: From puter of mimTN   December 28th 2010, 6:20 am

mim, I hope the new med helps and brings no bad side effects.

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PostSubject: Re: From puter of mimTN   December 28th 2010, 6:43 am

Mim, here's to hoping the meds work and brings you NO bad side effects. And never apologize for sharing with us, that is what we are here for!!!! Look at the year I've had and you have ALL helped me through it!!!! cheek kiss

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PostSubject: Re: From puter of mimTN   December 28th 2010, 9:37 am

Mim I hope the meds work and with no side effects! Please do not apologize for sharing and asking for prayers. I have had several family members battling cancer and I know everyone needs all the prayers! Hug wrap up in arms
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PostSubject: Re: From puter of mimTN   December 28th 2010, 10:25 am

thinking of you today mim Smile. Keep me updated on how it's going!! Hug wrap up in arms

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PostSubject: Re: From puter of mimTN   December 28th 2010, 10:36 am

Mim I will say a prayer for you too. Hug wrap up in arms
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PostSubject: Re: From puter of mimTN   December 28th 2010, 2:37 pm

God Bless your Mim!! You are in me prayers!
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PostSubject: Re: From puter of mimTN   December 29th 2010, 8:55 pm

Wishing you success and good health Mim.
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PostSubject: Re: From puter of mimTN   December 30th 2010, 10:33 am

Mim - you are in my prayers. I hope you enjoy good health in the new year and have tons of fun!

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PostSubject: Re: From puter of mimTN   December 30th 2010, 11:32 am

Hug wrap up in arms, Mim! xoxoxo

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PostSubject: Re: From puter of mimTN   December 30th 2010, 11:48 am

The last post in this thread from me. This is good thing.
When I joined AABB I was in denial, big time. I really believed I could take a miracle pill and live as if I did not have cancer. I planned to take my miracle pill, and just have fun. AABB was part of the fun.
Then things started going wrong. I am so glad I joined a site with such caring people. Some helped me see I needed to recruit more help and not just vent here when things went wrong. After the mess I got in this year that ended me in hospital, I have new Onc. a GI specialist, and a Nurse Practitioner to keep it all organized and to help me if I need to add another specialist to the list. I also have an online support group for people that have CML and they are great help. I learned I needed to ask for help, i.e. I was so busy convincing my daughter that I was okay, she had no clue how sick I was. Needless to say, after hospital thing she was pissed at me. When I came home she and the grands were here at least every other day and were wonderful. I asked old friend to drive me to Dr. appt that I was too weak to drive to, she was happy to do it. I did have to listen to lecture about not telling people sooner how sick I was. Then my neighbors came calling and let me have it for not letting them know. Now, if they don't see me out for few days, they check on me. Along with other things, I am being proactive not reactive.

If you ever get to wondering how I am please pm me. But now AABB is my fun place and that is what I want. I have a bee pin that I just look at that keeps me doing the next thing next and lots of other less tangible things that so many of you have given me. I have been blessed. I don't have the words to say what you all mean to me.
It is not overstating to say that some of you helped me save my own life.
AABB and DUTS own a piece of my heart and all of my gratitude.

Now on to the New Year and lots of fun.
xoxoxoxoxo
alice
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PostSubject: Re: From puter of mimTN   November 10th 2011, 8:29 pm

LOL, okay that was not the last post. I had to for this news!!
I hope you will understand when you read this.


Good news and some news that maybe great!

I saw oncologist today and got my FISH test results.
There are 0% leukemic cells!!!
They have to do a more sensitive test to find them. I go next week to main lab to get it done. This means I am in partial remission, maybe complete remission. As long as I take the meds and they work I will have chronic leukemia. But I have to stay on meds and it makes me sick. I will spare you details. I have been having bad time excepting that I will always be sick.

Which brings me to the maybe great news.
Next wed they are also going to start tests to see if I am candidate for bone marrow transplant. IF I am and IF it does this time next year I will be cured. No leukemia. I don't need donor, they will kill all my nasty bood stuff in bone marrow and then go in and take clean scrubbed stem cells, grow them and put them back in. Poof! my body will start making leukemia free blood just like it did the day I was born.
New cutting edge studies just came out, they used to not do transplants for people over 50. But they now know age is NOT as big a factor of success as they thought. They have found markers in cells that more correctly predict good outcome of transplant. Plus all my organs are working perfect.
Except for nasty side effects that are bane of my exsistance, Dr. says I am stronger than anyone my age and condition should be. I bounch back and take more like 37 year old than 57 yr old. I will see Dr and may have test back Dec 15. They take while to do. I have no clue what process is in labs and why it takes so long. Except very specialized tests and only few labs do them.

I am stunned, did not expect this news! But very hopeful and even if no transplant the meds still have me in remission and Chronic not fatal leukemia.

But if markers are there and right I may be rebooted and ready to roll in 2012!

I am bouncing off the walls! Too late not to get my hopes up.
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PostSubject: Re: From puter of mimTN   November 10th 2011, 8:37 pm

That is so wonderful to hear Mim!!!!!!!!!!!

I am dancing and bouncing too. I got the results of my echo today and my heart is back to normal.

Day of miracles indeed.

I am so happy for you.
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PostSubject: Re: From puter of mimTN   November 10th 2011, 8:38 pm

OMG min that is wonderful news!!!! This is so exciting. I will pray you are a candidate!!!
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PostSubject: Re: From puter of mimTN   November 10th 2011, 8:43 pm

KayS wrote:
That is so wonderful to hear Mim!!!!!!!!!!!

I am dancing and bouncing too. I got the results of my echo today and my heart is back to normal.

Day of miracles indeed.

I am so happy for you.

Oh Wow, that is great news! Happy for you.
lol, I have been busting with this all day. trying not to get hopes up. Took nap and woke up and said, it is lost cause, I have hopes up. just go with it.
But your news, I am so thrilled for you.

day of miracles.
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PostSubject: Re: From puter of mimTN   November 10th 2011, 8:48 pm

So happy to hear the great news, mim. jumping

Great news for you, too Kay. woo hoo 2
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PostSubject: Re: From puter of mimTN   November 10th 2011, 9:00 pm

So happy to hear such wonderful news for a change. I'm so happy for you mim and kay, nothing like ending the night with a smile on my face.
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PostSubject: Re: From puter of mimTN   November 10th 2011, 9:14 pm

Such positive news!! I'm so happy for you (((Mim))) and thanks for keeping us up to date with how you are doing.

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PostSubject: Re: From puter of mimTN   November 10th 2011, 10:01 pm

great news!!!!!!!!!!!!
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PostSubject: Re: From puter of mimTN   November 10th 2011, 11:20 pm

cheers cheers cheers cheers cheers cheers cheers to Mim!!!!

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PostSubject: Re: From puter of mimTN   November 11th 2011, 5:21 am

Fantastic news, Mim!!!! Very Happy
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PostSubject: Re: From puter of mimTN   November 11th 2011, 5:45 am

Great news mim.
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PostSubject: Re: From puter of mimTN   November 11th 2011, 8:27 am

P.S. Just saw your news, too, KayS - so happy for you! Very Happy

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PostSubject: Re: From puter of mimTN   November 11th 2011, 8:54 am

Great news for both Mim and Kay! Fingers crossed for you Mim.
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PostSubject: Re: From puter of mimTN   November 11th 2011, 4:45 pm

Thrilled for both of you! I'll keep praying and sending those positive thoughts.
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PostSubject: Re: From puter of mimTN   November 11th 2011, 5:43 pm

I have been sleeping a lot, in between my brain going 90 to nothing with all the what ifs? etc. trying to calm me down cause Dec 15th or whenever they get my results back the answer maybe No.
I will be thrilled if answer is yes and all goes well, but have to prepare so as not to be devastated if I do get a no.

thank you all,
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PostSubject: Re: From puter of mimTN   November 11th 2011, 10:09 pm

mimTN wrote:
I have been sleeping a lot, in between my brain going 90 to nothing with all the what ifs? etc. trying to calm me down cause Dec 15th or whenever they get my results back the answer maybe No.
I will be thrilled if answer is yes and all goes well, but have to prepare so as not to be devastated if I do get a no.

thank you all,


Such good, hopeful news Alice. You can't help but be excited and anxious about the outcome.

Fingers crossed and lots of good thoughts and prayers coming your way for positive results.
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PostSubject: Re: From puter of mimTN   November 11th 2011, 10:14 pm

KayS wrote:
That is so wonderful to hear Mim!!!!!!!!!!!

I am dancing and bouncing too. I got the results of my echo today and my heart is back to normal.

Day of miracles indeed.

I am so happy for you.

So happy for you Kay, great news. What a relief that must be.

Keep the good news coming!

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