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fran641

Cancer, Chemo, Gluten Ughhh

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I'm still a little groggy but really wanted to catch up guys up. First the prepping was a lot easier thanks to the prayers and Lorazepam. I was still out when the doc talked to my family but this is what we know. The cancer is not in the ducts. There is a mass in my pancreas that is closing the ducts and why he reinstalled a stint. He has gone as far as he can with testing so now it's on to Shands Hospital for different tests or just surgery.

I will call the docs office tomorrow and find out how fast I can get to Shands. I may have to have a temper tantrum to get this moving along. I can't bear the lack of a definite diagnosis much longer. In my core I know this is in God's hands but God knows my weaknesses. Thanks for all your good thoughts and prayers.

Fran

Fran, you are amazing to go through all this and have the presence of mind to inform us on what is happening. I'm SO glad the prepping was better than you expected. We've been praying for that! Glad that cancer is not in the ducts.

You are right - this IS truly in God's hands, thankfully - the best hands you can get! :D But I also believe you need to push the process along if you can as others have said. Man, you are one courageous woman. I admire your fortitude!

Will continue to pray that this happen quickly.


<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

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I AM SO HAPPY...that sounds nuts but the GI Oncology Department of Shands Hospital called today and is seeing me tomorrow afternoon. YEAH They will get to the bottom of all of this quickly and I can be over and done with this.

I was supposed to start an IV maintenance therapy (every other month for 2 yrs.) for the lymphoma in May when that last PET scan came back with a problem. If all of this "stuff" with the pancreas gets cleared up I can get on with the other treatment that will hopefully keep the lymphoma at bay for a while. The form of Lymphoma I have is follicular Non Hodgkin and is not curable but it is treatable as I go in and out of remission.

I can't thank you all enough for all your support and good wishes. I did tell the nurses my one and only joke I know while they were trussing me up like a turkey. -an old lady wanted to kill herself but wanted to be sure to succeed so she called her doctor and asked where exactly is my heart located? He said directly below your left breast. She shot herself in the knee----

Have a laugh today or at least don't be too offended.

xo Fran


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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Oh Fran,

:lol: --I laughed at your joke...thanks!

You're a real "pistol"--as we used to say in Boston!!

This IS great news--get in there, get it going and GET WELL!

Thanks for letting us know.

Prayers at work? maybe!! good!! Sometimes, when things work out all right, I don't question it, I just whisper.. Thank you. ;)

best luck tomorrow, hon!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Irish, glad you had a laugh today.

I do believe that prayer does work and did say "thank you" right away. All the asking needs to have my thanks you's attached!!!! :rolleyes:

Fran


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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I AM SO HAPPY...that sounds nuts but the GI Oncology Department of Shands Hospital called today and is seeing me tomorrow afternoon. YEAH They will get to the bottom of all of this quickly and I can be over and done with this.

I was supposed to start an IV maintenance therapy (every other month for 2 yrs.) for the lymphoma in May when that last PET scan came back with a problem. If all of this "stuff" with the pancreas gets cleared up I can get on with the other treatment that will hopefully keep the lymphoma at bay for a while. The form of Lymphoma I have is follicular Non Hodgkin and is not curable but it is treatable as I go in and out of remission.

I can't thank you all enough for all your support and good wishes. I did tell the nurses my one and only joke I know while they were trussing me up like a turkey. -an old lady wanted to kill herself but wanted to be sure to succeed so she called her doctor and asked where exactly is my heart located? He said directly below your left breast. She shot herself in the knee----

Have a laugh today or at least don't be too offended.

xo Fran

Your relief is palpable and optimism contagious. I am SO pleased and thrilled for you! And your joke is cute. :)

My aunt was diagnosed with follicular NH nine years ago and is still working FT as a nurse. So, you can do this!! And I'm not just saying that...


<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

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Irish, glad you had a laugh today.

I do believe that prayer does work and did say "thank you" right away. All the asking needs to have my thanks you's attached!!!! :rolleyes:

Fran

I laugh every day, Fran...no matter how dark it has ever been in my life--I think humor saves our butts and our sanity, don't you?? :)

I should be more specific...hope you don't think this weird, but when I whisper my thanks, it's to my beloved Dad for whatever he does "up there" on my behalf with the "Big Guy" :D I do " plead my case' directly to God when I am in need, but I figure He is quite busy with more important concerns than mine and so, it helps to have an "inside man". :)

Now, hopefully that made YOU smile. :)

Oh Fran, I do admire your spunk...I am really prayin for ya, hon!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Irish, I don't think it's weird to talk to your dad and give thanks for his intervention. Both my parents are gone and our house number was 506. Whenever I see that number on a clock, and it is often, I always talk to both of them and ask them to intercede on behalf of my family. Many years after they passed away I mentioned that to my little sister and she burst out laughing. She has done the same thing since they died.

Life is too short to not have a sense of humor. My oncologist (lymphoma doc) must have had his funny bone removed at birth. I often made remarks that just flew over his head. It would make me giggle when he didn't have a clue what I was saying. ;)

Take care,

Fran


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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Irish, I don't think it's weird to talk to your dad and give thanks for his intervention. Both my parents are gone and our house number was 506. Whenever I see that number on a clock, and it is often, I always talk to both of them and ask them to intercede on behalf of my family. Many years after they passed away I mentioned that to my little sister and she burst out laughing. She has done the same thing since they died.

Life is too short to not have a sense of humor. My oncologist (lymphoma doc) must have had his funny bone removed at birth. I often made remarks that just flew over his head. It would make me giggle when he didn't have a clue what I was saying. ;)

Take care,

Fran

Ohmygosh, Fran LOL! when I see 6:12 on a clock --I think of my Dad (his birthday) !! so I get what you are saying!

Keep your sense of humor, Fran--it is obvious it helps you and that is a very good thing!

G'night! Best luck tomorrow. You are in my thoughts!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Fran, I'm late to the party and I didn't have time to post last night but I'm thinking good thoughts for you today.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Here is where things are today. Yesterday I had a CT scan at Shands and met the surgeon. While we were discussing the whipple surgery that would likely be done next Thursday the doc received a phone call. It was the GI doc from Tallahassee calling to let him know that there was one biopsy in the lab that would not be back for one week. It was a test for primary pancreatic lymphoma. So the surgeon will wait for that biopsy because if it is PPL it can be treated with chemo and radiation. The 3 of us (hubby, daughter and myself) had a sigh of relief at this possible option. With the holiday weekend involved this may slow things down with the labs. I'm not sure why I would relapse in 5 months, does that mean it's a more aggressive form of lymphoma? I'll be curious to see.

I can do lymphoma, I know that beast and I can do chemo and radiation. Looking at the alternative surgery I am really praying for the PPL.

The usual pancreatitis has kicked in from the last scope so I'll be glad for the break in docs and back to jello and icees.

So onward we go and I so appreciate all your prayers.

xo Fran


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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Keeping my fingers crossed for you. You show a great deal of strength dealing with all this. Keeping you in my thoughts and prayers.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Fran,

It sounds like you view the "beast that you know" as easier to slay! Now, that's the wise warrior way of thinking, girlfriend! :)

Your relief tells me this possible alternative path for treatment is preferable to you for many reasons.

Try to relax, enjoy the weekend with your family, and I continue to hold you in my thoughts and prayers.

My Best, Irish


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Fran..I'm new here and just read through this thread. You are AMAZING!

My best wishes to you in your treatment. Im finding that getting diagnosed quickly and correctly means a world of difference.

I go in today to have a CT scan redone. The one I had in March showed enlarged lymph nodes. The Dr. is checking to see if I have intestinal lymphoma. Originally she was going to redo the test in July, but after seeing her on Tuesday and reviewing the biopsy report she made it sooner.

I had a colon/rectal cancer in 2003 with a resection surgery. It was stage 1 so no chemo or radiation was given. The word "cancer" causes my anxiety level to go into overdrive.

I guess when going through this..you just take one step at a time? With each new answer you say.."ok..what do we do about it?"..and then do it!

Whatever my outcome today...I want you to know you are an inspiration to me. good luck kiddo! :)

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You picture looks so young to have already battled one cancer and facing the fear of another one. I pray it's not Lymphoma but it is certainly doable. Thanks for all your kind words. I have a grandson (we have 11 grands total) that we call Bubba. :rolleyes:

Have a great day.

Fran

Fran..I'm new here and just read through this thread. You are AMAZING!

My best wishes to you in your treatment. Im finding that getting diagnosed quickly and correctly means a world of difference.

I go in today to have a CT scan redone. The one I had in March showed enlarged lymph nodes. The Dr. is checking to see if I have intestinal lymphoma. Originally she was going to redo the test in July, but after seeing her on Tuesday and reviewing the biopsy report she made it sooner.

I had a colon/rectal cancer in 2003 with a resection surgery. It was stage 1 so no chemo or radiation was given. The word "cancer" causes my anxiety level to go into overdrive.

I guess when going through this..you just take one step at a time? With each new answer you say.."ok..what do we do about it?"..and then do it!

Whatever my outcome today...I want you to know you are an inspiration to me. good luck kiddo! :)


Fran

Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

Large B cell lymphoma 2011

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