Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cancer, Chemo, Gluten Ughhh

fran641

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted

I've been so sick all week since the test. The blockage is were bile comes from the head of the pancreas into the intestines. He doesn't yet know if that blockage is cancer, stone or sludge blocking the tube. Next Friday I will have a more invasive scope to remove the blockage and have it tested if it's a tumor. I am yellow. YIKES. My bilirubin count has gone for 1.5 a week ago to 6 today. I am in so much pain and have constant nausea. He upped my pain meds and I'm using my chemo meds for nausea. I can't sit up or lay down for too long, it just hurts everywhere in my rib cage. I have been on liquids since last Thursday and have to remain so until after next Friday. I've lost 7 lbs!!! yeah

I am gluten free! Liquids are pretty safe...lol

Thanks for all your prayers and good wishes.

Fran

((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))

Prayers and good wishes still coming your way.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 63
  • Created
  • Last Reply
IrishHeart Veteran
IrishHeart
Posted

oh Fran,

I am so sorry you are feeling so lousy.

Sometimes, as I lie awake from the pain, I have questioned why we have to suffer so much.

No mystical answers ever come :unsure: I have always asked too many questions, even as a child. :rolleyes: Why? why? why? Fortunately, I had patient parents who answered me. :) or sent me to the encyclopedia :huh: . (remember those?)

But here is what I do know...2 years ago, when I was so very ill I could barely lift my head from the pain and I was shrinking down, thinking...when will this stop? when will I ever have a day without pain? what is wrong with me? Why can't they (the many doctors I saw) help me?..my husband ( a man of few words, but long on patience and unconditional love and support) put this up on the fridge for me to see every morning:

"You may have to fight a battle more than once to win it" (Margaret Thatcher)

At first, I thought .."Are you freakin kidding me? Yeah, that's what I need, some patronizing quotation."...I almost ripped it down. I thought...I don't want to hear THAT! I cannot fight anymore. ..and yet, I did.

You have already waged war and won!. You are a strong person apparently and even though I do not know you personally, I know what it takes to beat cancer. If you can do that, you can do anything. Like I said...You're a warrior.

Fran, I am thinking of you and sending all the cyber-space support I can. Prayers, good wishes, finger crossed. Keep us posted.

fran641 Contributor
fran641
Posted
  • Author

Sorry I haven't written. Thursday the doc had me admitted to the hospital. I had pancreatitis and he did the ERCP? (I may have gotten lost on some of those initials) yesterday. I have a malignant tumor blocking my bile duct that is right where the ducts come into the pancreas. The biospy he took yesterday will tell if it's pancreatic cancer or bile duct cancer. The biopsy should be back in a week. I go back to him in 10 days and he will let me know the next step. Probably one more proceedure to see how much of the pancreas to remove, then surgery.

He was wonderful with me today. He held my hand the entire time he described what was going on. He was so hoping that it was a gallstone like all of us were. He hugged me before I left and told me he will do everything he can to deal with this. I really like this doc, can you tell? His specialty is pancreatic cancer and other digestive cancers.

I just found out today so my plan is to crash today and deal with it tomorrow.

Thanks for all your kind thoughts and prayers.

Fran

love2travel Mentor
love2travel
Posted

What a lovely doctor. Fran, sometimes it is difficult to even know what to say. Just know that you have given me encouragement without knowing it! :D It seems as though you are going through too much to humanly bear - I'm praying for you. Maybe it is a good evening to snuggle up with a lighthearted book.

ravenwoodglass Mentor
ravenwoodglass
Posted

Fran, I am sorry sorry that you are having to go through this. Please know you are in my thoughts and prayers daily.

IrishHeart Veteran
IrishHeart
Posted

and from me, too..lots of prayers and good thoughts!

fran641 Contributor
fran641
Posted
  • Author

The docs office called and said the biopsy came back benign. He isn't satisfied with that result because of what he saw and couldn't get to last Friday. He is referring me to a surgeon to go in and see/remove what he looked at. This has been one wild roller coaster ride. I'm praising God for good results and deal with the next step when it gets here. I'm still in some discomfort from the last procedure but yesterday was able to step down to extra strength Tylenol from the big gun pills.

I thank all of you for your good wishes and prayers.

Fran

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Judy3 Contributor
Judy3
Posted

The docs office called and said the biopsy came back benign. He isn't satisfied with that result because of what he saw and couldn't get to last Friday. He is referring me to a surgeon to go in and see/remove what he looked at. This has been one wild roller coaster ride. I'm praising God for good results and deal with the next step when it gets here. I'm still in some discomfort from the last procedure but yesterday was able to step down to extra strength Tylenol from the big gun pills.

I thank all of you for your good wishes and prayers.

Fran

Fran, I have not been in on this conversation as I missed it but I read all of it from the beginning this morning and felt I had to chime in. Wow.. you are a warrior! I've never had to battle cancer so I can't say I can relate but I can imagine the stress and pain.. and I feel for you. You come across as a woman of power and strength through your words and with the right team (your doctor seems wonderful) you will make it past this obstacle too. I try to look at each new discovery as an obstacle to get around or over. I picture myself on an obstacle course and each hill I have to climb has a name Celiac... Diabetes... and for you Cancer would probably be the biggest challenge and you are doing great. My thoughts are with you, hang in there

*Judy

IrishHeart Veteran
IrishHeart
Posted

The docs office called and said the biopsy came back benign. He isn't satisfied with that result because of what he saw and couldn't get to last Friday. He is referring me to a surgeon to go in and see/remove what he looked at. This has been one wild roller coaster ride. I'm praising God for good results and deal with the next step when it gets here. I'm still in some discomfort from the last procedure but yesterday was able to step down to extra strength Tylenol from the big gun pills.

I thank all of you for your good wishes and prayers.

Fran

Fran, I am continually humbled by your courage and strength! You're just amazing!! I am thinking of you and have my fingers crossed and will keep you in prayer. Hang tough! IH

fran641 Contributor
fran641
Posted
  • Author

Courage and strength are such strange words to me. I only see the days/moments when I go to my room and just beg God to let me be with hubby and the kids (2 + 11 grand/great-grands) for Christmas. I am a woman of faith but that faith seemed to be so far away in those moments. The relief is that God picks me up, dusts me off and faces me forward. Then I get good news and feel shame in my lack of trust.

The emotional part of this is the absolutely most challenging thing I've ever experienced. Celiac and Cancer is that hill to climb and I could not do it without the encouragement of all of you and the other wonderful people I've met through these boards.

Speaking of the celiac....a friend sent me a huge gift package of food yesterday. It was filled with soups, breads, treats and other great comfort food. NONE of it gluten free! My husband is enjoying all that stuff!!! lol

I ate my gluten free pasta and spaghetti sauce for dinner.

Ahhhhh, life is a beach............and I'm sunning on it. LOL

Fran

IrishHeart Veteran
IrishHeart
Posted

B):lol: Life IS a "beach" indeed!!

The gift basket was a sweet thought :) , even though you could not indulge. :(

"One day at a time" seems to be a familiar phrase around here. You are doing all you can, Fran and you ARE very brave whether you realize it or not. Courage isn't the absence of fear, it's the ability to go on even when you are afraid (I think that's how that saying goes!) :)

While I do not face the exact same challenges you do, I have had to make myself get up after minimal sleep and face every morning in severe pain for several years. I hate the pain, but I do it because I think of the things that are worth fighting for--my life, my husband, my family.

I won't let this beat me. You won't let this beat you.

I told you....You're a warrior princess...! Believe it.

fran641 Contributor
fran641
Posted
  • Author

I don't have many words right now. It is cancer and I'll be scheduled for whipple surgery in Gainesville FL within the next 8-10 days. There is a lot of info about the whipple on google.

Thanks for all your prayers.

Fran

ravenwoodglass Mentor
ravenwoodglass
Posted

I don't have many words right now. It is cancer and I'll be scheduled for whipple surgery in Gainesville FL within the next 8-10 days. There is a lot of info about the whipple on google.

Thanks for all your prayers.

Fran

((((((((((((((((((((HUGS)))))))))))))))))))))

So sorry you got such bad news. Still thinking of you and keeping you in my prayers.

IrishHeart Veteran
IrishHeart
Posted

Dear Fran,

I read about the whipple technique and think I grasp what you are facing. I know we only "met" on here, yet I want to tell you that I am thinking of you with all good wishes.

My best,

Irish

love2travel Mentor
love2travel
Posted

I don't have many words right now. It is cancer and I'll be scheduled for whipple surgery in Gainesville FL within the next 8-10 days. There is a lot of info about the whipple on google.

Thanks for all your prayers.

Fran

Fran, I do not even know what to say except to please try to take care of you. I have not had experience with cancer myself but understand the desperate sinking feeling of being told close family members have it. My step dad was the most recent. He had advanced colon cancer and his surgery removed every single bit of it.

I imagine everything in your life has come to a halt. Please do not give up hoping - there always is hope!

I will continue to pray for you. I hope you have a good support system in place. You need to be surrounded by kind, caring, encouraging, positive and loving people. :)

fran641 Contributor
fran641
Posted
  • Author

Thanks everyone. It is easier to talk to all of you on this computer than it is to talk on the phone today. I'm so grateful that you all listen to my yakking. I am feeling hopeful that they have found it early. Because I had the Lymphoma I get regular PET scans and that is what found this stuff 6 weeks ago. I just want to get to the other side of surgery and on to recovery.

Emotionally I'm wired and because of pancreatitis I am on all clear liquids. I AM A STRESS EATER.....that part is hard!!! I'm hungry and today is only the first day of no food. This may be this way until the surgery! That little sound you hear is my tummy growling! LOL

I hope you are all having a good day and no pain from the celiac critters.

xo Fran

fran641 Contributor
fran641
Posted
  • Author

Hello everyone and hope you are having a good day.

I did the liquids for 6 days and just started on food yesterday. I will be having a scope (spyglass) this Monday. I would appreciate your prayers and good thoughts this test is tough for me. I had a panic attack before the one I had a couple weeks ago so I dread this one. I have some meds to take before I go so armed with prayers and meds it will be over with quickly. No date on the hospital yet.

Take care,

Fran

love2travel Mentor
love2travel
Posted

Hello everyone and hope you are having a good day.

I did the liquids for 6 days and just started on food yesterday. I will be having a scope (spyglass) this Monday. I would appreciate your prayers and good thoughts this test is tough for me. I had a panic attack before the one I had a couple weeks ago so I dread this one. I have some meds to take before I go so armed with prayers and meds it will be over with quickly. No date on the hospital yet.

Take care,

Fran

Fran, I am unsure what a spyglass scope is but will continue to pray that it will go smoother this time without ANY anxiety. Is it similar to having a gastroscopy/endoscopy? Will you be medicated enough to sleep through it? Thank you for informing us - I was wondering how you were doing. :) Keeping you in my thoughts as you go through these rough days.

IrishHeart Veteran
IrishHeart
Posted

Dear Fran

What a lovely face you have! :)

I am sure what you are facing is anxiety-provoking, yet you have also told us you have a great support system down there. Lean on them and talk about your fears. When I awaited many tests, scopes,MRI tubes,surgeries, etc. the past few years, I would get that anxious feeling and I sang a song to myself. It sounds silly, but it helped me. Know in your heart that you are being thought of by many others --even if you have never "met" us in person. Those of us who walk this path of illness and pain share a common bond.

The Irish wish one another well by saying ..."until we meet again, may God hold you in the Palm of His Hand" ;) ...so, Fran, in a short time, you will come back and tell us you handled this next hurdle like the brave warrior princess that you are! ;)

I am thinking of you with all good thoughts!

fran641 Contributor
fran641
Posted
  • Author

Thanks for the replies love2travel and irishHeart. My hotmail address is irish641 so you can guess I'm an Irishman around here too. I do have a lot of support here and I know I will get through this test.

It is an Endoscope with a fiber optic on the end that will travel up into the bile duct to see how invasive the tumor is. Now since I decided to reside in the "house of denial" this past week I also chose the bedroom marked "no tumor found, no surgery needed"........

If wishing and praying makes it so why not throw a penny in the fountain and spend time on my knees. Not exactly in that order mind you. God laughs at my penny throwing and allows me my silliness..at least in my pea brain he does.

That photo of myself was recently taken at our church yard sale which is why I'm holding up a teddy bear. I needed a prop, I hate to be photographed...lol

Have a great day you guys

Fran

IrishHeart Veteran
IrishHeart
Posted

Thanks for the replies love2travel and irishHeart. My hotmail address is irish641 so you can guess I'm an Irishman around here too. I do have a lot of support here and I know I will get through this test.

It is an Endoscope with a fiber optic on the end that will travel up into the bile duct to see how invasive the tumor is. Now since I decided to reside in the "house of denial" this past week I also chose the bedroom marked "no tumor found, no surgery needed"........

If wishing and praying makes it so why not throw a penny in the fountain and spend time on my knees. Not exactly in that order mind you. God laughs at my penny throwing and allows me my silliness..at least in my pea brain he does.

That photo of myself was recently taken at our church yard sale which is why I'm holding up a teddy bear. I needed a prop, I hate to be photographed...lol

Have a great day you guys

Fran

I hate to be photographed as well. (hence my lack of one on here )...This is also tough since both hubby and I are avid photographers and he is always insisting I get in the picture. arrgh! :rolleyes:

Fran, I do not think you are necessarily in denial--perhaps you are just being incredibly optimistic?! There's nothing wrong with that, hon. Acknowledging the fear is important and being prepared for all outcomes is essential, yes, but if you wish to remain wildly optimistic, I think that's better for your spirit, don't you!? Just my humble opinion.

fran641 Contributor
fran641
Posted
  • Author

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

nik95670 Rookie
nik95670
Posted

Fran,

I just found this string an found myself in tears reading through all the posts. You are brave and humble and with a great spirit and sense of humor. I think I needed to read all thi to stop feeling sorry for myself and what little, endurable pain I'm in. If you can handle all that then I can handle this celiac disease! Thank you for keeping me tough. My dad always said "Keep your chin up, God will never make us go through anything we aren't strong enough to handle."

IrishHeart Veteran
IrishHeart
Posted

Fran,

I am happy yo hear you got through the procedure and the ducts are clear. I know you were worried about that--but see, your warrior princess spirit pulled you through! That's good news for you, yes?

Okay, onto the next step.

If I were you, I would be very insistent you get things going. You have every right to want to resolve this immediately.

You can do this!

Prayers, well wishes, all my good thoughts!

As "nik" says in the post above, whether you know it or not, you are inspirational!!

(((HUGS)))

lynnelise Apprentice
lynnelise
Posted

Just saw this post and wanted to say I hate that you've been through so much! I'll be praying you can get on to the next stage of treatment without delay!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.