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

First Day Of Chemo Went Well

bonnie blue

By bonnie blue
in Coping with Celiac Disease

Recommended Posts

bonnie blue Explorer
bonnie blue
Posted

Good morning friends,

Well yesterday was my first day of chemo, actually my daughter and I don't like the name so we have decided to call it the cocktail hour, sounds much better right. :) Anyways it is a very aggressive treatment, and of course with the Celiac disease that makes it that more fun. I have three chemo drugs, along with steroids, anti-nausea meds, magnesium, and I cant remember the name but also a drug to keep my white count up. The good news is that I have a port so it is only one poke at the beginning of the day, and you know what I can't even feel it, so that is good. Their main concern now is keeping my weight stabilized, my goal is to make it through the two months of chemo without having to have a feeding tube, so I am eating every two hours, just small amounts, my husband and girls have been great about reminding me, actually they made two signs for me in the house that say "Don't forget to eat!"

So I am still in very good spirits, the doctors, nurses, everyone who is treating is very optimistic about a good outcome, I know this will be a very difficult time, the worst time will be the stomach surgery, but right now just taking this one day at a time. Thank you all so much for the support it means so much to me, sending out hugs and good thoughts to all. B)

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

blessings & prayers are being sent your way...

Diane-in-FL Explorer
Diane-in-FL
Posted

Hugs!! I am hoping that you get through this OK.

bigbird16 Apprentice
bigbird16
Posted

Keeping you in my thoughts and prayers!

BabsV Enthusiast
BabsV
Posted

Good luck! I hope everything goes smoothly.

ravenwoodglass Mentor
ravenwoodglass
Posted

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

Keeping you in my thoughts and prayers. I hope things continue to go smoothly.

DonnaMM Explorer
DonnaMM
Posted

I am sure you will do just fine!!! Just be positive! Don't stress too much about the feeding tube they can be very beneficial and easily removed after treatment. I have been through chemo before and although my treatment was fairly easy and everyone's experience I different feel free to email me if you need to vent. Your family will be best your support thought this. My prayers are with you!

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

Celiac.com Sponsor (A8-M):


navigator Apprentice
navigator
Posted

Glad your first cocktail hour went well. Great idea to rename it and take control :D. Hope it continues to go well. Thinking about you and your family.

Jestgar Rising Star
Jestgar
Posted

We're here with you Bonnie B. Stay strong.

lizzy59 Newbie
lizzy59
Posted

I'm new to the forum, but still want to wish you the best--my thoughts and prayers go out to you!! As someone else said, take it one day at a time. God bless!

lucky28 Explorer
lucky28
Posted

Good idea~coctail hr!lol glad to hear everything is starting out well! Good luck, keep us updated!

Reba32 Rookie
Reba32
Posted

looks like you're discovering ways to deal with this in a positive light, that's awesome :) Cocktail hour it is! LOL

Skylark Collaborator
Skylark
Posted

I so glad to hear the first treatment went well. Good luck!!!

Celtic Queen Explorer
Celtic Queen
Posted

The Cocktail Hour...I love it. I've heard that keeping a good attitude during chemo can really help you fight the cancer. Sounds like you're already ahead on that score.

Gemini Experienced
Gemini
Posted

Bonnie...I am a very tough person emotionally but your bravery and good spirits leave me in awe. I am one of those very thin celiacs

who was close to a feeding tube at diagnosis so can understand totally your concern over possibly having one. Eating every 2 hours sounds like

a fantastic plan and I hope the weight sticks to your frame with every bite! You are an amazing person and I look forward to your continued reports and well being. Keep up that amazing spirit!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thanks for letting us know how it's going for you. I like the renaming to cocktail hour. ;)

It sounds like you still have your sense of humor? It will help you get through this. I admire your positive attitude.

(((hugs)))

mushroom Proficient
mushroom
Posted

Way to go, Bonnie. Each day at cocktail hour I will sip and send best wishes your way. You have a great attitude. {{{hugs}}}

pricklypear1971 Community Regular
pricklypear1971
Posted

So glad it went well. Cocktail hour always does, right?

sahm-i-am Apprentice
sahm-i-am
Posted

Stay strong Bonnie, but if you need to let loose and vent know we are here! Thinking happy positive thoughts for you and your family.

Wendi

Googles Community Regular
Googles
Posted

I'm glad to hear your first cocktail hour went well. I love the name.

AVR1962 Collaborator
AVR1962
Posted

Wonderful news!

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say? do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did it take to get a diagnosis? if you are legally blind there are adaptive devices that will help ...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.