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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,033
    • Most Online (within 30 mins)
      7,748
    DeeDeeS
    Newest Member
    DeeDeeS
    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

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.