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

Recommended Posts

bonnie blue Explorer

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

blessings & prayers are being sent your way...

Diane-in-FL Explorer

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

bigbird16 Apprentice

Keeping you in my thoughts and prayers!

BabsV Enthusiast

Good luck! I hope everything goes smoothly.

ravenwoodglass Mentor

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

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

DonnaMM Explorer

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

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

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

lizzy59 Newbie

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

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

Reba32 Rookie

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

Skylark Collaborator

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

Celtic Queen Explorer

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

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

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

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

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

sahm-i-am Apprentice

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

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

AVR1962 Collaborator

Wonderful news!

Archived

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

  • 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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,156
    • Most Online (within 30 mins)
      7,748

    Shrub
    Newest Member
    Shrub
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.