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Cancer, Chemo, Gluten Ughhh

fran641

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fran641 Contributor
fran641
Posted

I had been gluten free since Jan. 09 and lost 70 lbs in a year. September of 2010 I was diagnosed with Lymphoma and began chemo in November. The predisone part of the cocktail turned on my compulsive eating pattern.

Until this March I was still gluten free but gained 30 lbs. Then for some absolutely crazy reason I started on gluten foods and boy has that been the pits. I am working now to get the weight off and stop the gluten insanity. It was like I just didn't care. I am cancer free and so happy about that. Getting back off the gluten is the hardest thing I've done so far. It is much harder than the first time I became gluten free. I know I have to do it just one meal at a time and I will get this under control.

I need to go back to the very first week I found out I had celiac and read those books again to remind me of why I have to do this for me.

Thanks for letting me share this tricky journey.

Fran

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eatmeat4good Enthusiast
eatmeat4good
Posted

Wow, Fran, that is wonderful that you are Lymphoma free now and the treatments worked.

Please take the gluten very seriously. It is like an opiate you know...it tells you everything is gonna be alright while it slowly destroys your health and your body.

You didn't survive cancer just to have gluten destroy your health again.

I empathize with your struggle, it sounds like it is very difficult for you.

But you need the good nutrition now more than ever.

Find ways to treat yourself so you don't give in to gluten treats.

Fill up on protein for healing and vitamins and minerals for nutrition.

You don't want another secondary cancer from gluten.

You can do this. It is hard, but it is very possible to get off gluten for good.

Your body will thank you. Hang in there and re-read your books.

Question- Did a blood test pick up the Lymphoma? I'm scared of that one myself. I have long term undiagnosed Celiac and want to know what to watch for regarding Lymphoma.

I hope you kick the grip gluten has on you and that you feel much better on your next go round Gluten Free for Life!

ravenwoodglass Mentor
ravenwoodglass
Posted

Well I am going to put this bluntly. Lymphoma is one of the cancers associated with undiagnosed celiac. You are putting yourself at risk of the cancer returning by going off the gluten free diet. You HAVE to stop eating gluten. As mentioned gluten can be an addictive substance for us. If you continue to have trouble staying gluten free a counselor may be able to help you break the addiction. You have been through a lot and you want to live as healthy of a life as you can. Please go back strictly gluten free for yourself and those in your life who need you to be there with them. It isn't easy but you can do it.

((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

fran641 Contributor
fran641
Posted
  • Author

First, my blood work was always good. I began having some stomach pain in May '10 but lots of tests couldn't find anything. A colonoscopy found a tumor in my rectum that turned out to be follicular lymphoma. Then a PET scan found it in my thighs, hip, spine, rib and abdomen (my original complaint) plus the rectum. I was undiagnosed with celiac for over 30 years too and did fear cancer. My last PET 2 weeks ago has picked up some activity in my pancreas so it's off for more tests to a pancreatic cancer specialist. But I don't know if that is cancer so I'm considering myself cancer free until told otherwise.

You don't know how your post touched that sane part of my brain. I know I need to be MORE cautious now than ever before. Thanks for reminding me that I am important enough to take care of.

I have felt pretty rough after chemo and blamed that but now the truth is the yukkies are from the gluten doing it's number on my intestines. I can do this and today is the day.

Thanks again...

Fran

Wow, Fran, that is wonderful that you are Lymphoma free now and the treatments worked.

Please take the gluten very seriously. It is like an opiate you know...it tells you everything is gonna be alright while it slowly destroys your health and your body.

You didn't survive cancer just to have gluten destroy your health again.

I empathize with your struggle, it sounds like it is very difficult for you.

But you need the good nutrition now more than ever.

Find ways to treat yourself so you don't give in to gluten treats.

Fill up on protein for healing and vitamins and minerals for nutrition.

You don't want another secondary cancer from gluten.

You can do this. It is hard, but it is very possible to get off gluten for good.

Your body will thank you. Hang in there and re-read your books.

Question- Did a blood test pick up the Lymphoma? I'm scared of that one myself. I have long term undiagnosed Celiac and want to know what to watch for regarding Lymphoma.

I hope you kick the grip gluten has on you and that you feel much better on your next go round Gluten Free for Life!

IrishHeart Veteran
IrishHeart
Posted

Fran,

Just want to say...you faced down cancer and you are a warrior, girl! :)

You can beat the "gluten-jones"! ;) Just get back on track ASAP!

Hang tough and I hope you get good news from the test results. Let us know!

All the best, Irish

fran641 Contributor
fran641
Posted
  • Author

Thanks Irish and Ravenwood. No time like NOW to pull it together. Raven, I knew Lymphoma was one of the a possiblity but you never think it can happen to you. Win the lottery sure, get cancer nope....lol

Fran,

Just want to say...you faced down cancer and you are a warrior, girl! :)

You can beat the "gluten-jones"! ;) Just get back on track ASAP!

Hang tough and I hope you get good news from the test results. Let us know!

All the best, Irish

eatmeat4good Enthusiast
eatmeat4good
Posted

First, my blood work was always good. I began having some stomach pain in May '10 but lots of tests couldn't find anything. A colonoscopy found a tumor in my rectum that turned out to be follicular lymphoma. Then a PET scan found it in my thighs, hip, spine, rib and abdomen (my original complaint) plus the rectum. I was undiagnosed with celiac for over 30 years too and did fear cancer. My last PET 2 weeks ago has picked up some activity in my pancreas so it's off for more tests to a pancreatic cancer specialist. But I don't know if that is cancer so I'm considering myself cancer free until told otherwise.

You don't know how your post touched that sane part of my brain. I know I need to be MORE cautious now than ever before. Thanks for reminding me that I am important enough to take care of.

I have felt pretty rough after chemo and blamed that but now the truth is the yukkies are from the gluten doing it's number on my intestines. I can do this and today is the day.

Thanks again...

Fran

Fran,

Thank you so much for that information. I have normal bloodwork too and I have never had a scan...was hoping that wasn't the only way it showed up. But at least they scanned you and found the cancer. I hope your pancreas turns out to be ok. I know what gluten can do to your brain. It made me have distorted thinking. I know you have been though a lot and that chemo is no fun. Try to remember what worked for you the last time you got off gluten. For me, in the beginning, if I ate meat and vegetables all day long, I gave myself a snicker bar for a reward. It was a daily treat for a while...until I got good at the diet and decided to use my reward weekly instead of daily. You can find a treat you like and set small goals.

I hope you have some supportive people in your life and that you don't have a house full of gluten eaters around you. You have survived an ordeal. It's ok to not be perfect, but don't make your mistakes with gluten....have a snickers. :) I hope you will keep posting when you need support...we wanna watch you succeed and be an inspiration to the rest of us! Hang in there!

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IrishHeart Veteran
IrishHeart
Posted

Thanks Irish and Ravenwood. No time like NOW to pull it together. Raven, I knew Lymphoma was one of the a possiblity but you never think it can happen to you. Win the lottery sure, get cancer nope....lol

I just told my whole family about my genetic testing and since one cousin had lymphoma and another, melanoma, I felt I should tell them about my test results. I am thinking they had better be tested for celiac disease...And pronto!

When I learned the genetic combo I had accounts for only 1-2 % of the (diagnosed) celiac population, my first thought was...geesh...how lucky am I :blink: ...and yet, I cannot win the lottery!!

EatMeat gives good advice...just do one day at a time. Soon, that "gluten craving" will pass.

ravenwoodglass Mentor
ravenwoodglass
Posted

No time like NOW to pull it together.

You may not have won the lottery, yet..., but you are a winner in many other ways. It takes a lot of strength to get through what you have gotten through and you can beat the gluten monster. Wishing you the best and sending good thoughts your way.

Takala Enthusiast
Takala
Posted

Can you make your home gluten free ? If it's not in the house, it's less temptation. (altho some of us have enough aversion from what we feel like when gluten is consumed, it is a built in auto- motivator.)

Agree with the reward yourself with a gluten free treat idea. I don't "diet" for weight, but for health and happiness. You may find you just need to eat much more vegetables, fruits, good fats and proteins and less carbs to feel full.

Don't forget the gluten free vitamins and minerals.

fran641 Contributor
fran641
Posted
  • Author

I had forgotten how great I felt way back when without the gluten for the first time in my life. Last night I was so nauseous that I took my chemo meds for nausea for the first time since Feb. It is amazing what the mind can block out when it wants to. I was one sick puppy when I was diagnosed with celiac and felt so much better after a few months of eliminating gluten.

I woke up this morning feeling so much more positive about getting gluten free again. My house is not gluten free because my husband isn't celiac. That didn't stop me from eating right before and I can't use it as an excuse now. Thanks for the suggestion about treating myself once in awhile, I'll do that.

Thanks for the support you've all given me and I know it has made a difference in my attitude this morning. I heard constantly that my attitude would make all the difference in my cancer recovery and that is absolutely true with this disease also.

IrishHeart Veteran
IrishHeart
Posted

I had forgotten how great I felt way back when without the gluten for the first time in my life. Last night I was so nauseous that I took my chemo meds for nausea for the first time since Feb. It is amazing what the mind can block out when it wants to. I was one sick puppy when I was diagnosed with celiac and felt so much better after a few months of eliminating gluten.

I woke up this morning feeling so much more positive about getting gluten free again. My house is not gluten free because my husband isn't celiac. That didn't stop me from eating right before and I can't use it as an excuse now. Thanks for the suggestion about treating myself once in awhile, I'll do that.

Thanks for the support you've all given me and I know it has made a difference in my attitude this morning. I heard constantly that my attitude would make all the difference in my cancer recovery and that is absolutely true with this disease also.

I had to laugh because that is the exact phrase I use about myself...I was "one sick puppy" on gluten!

Fran, You sound like a strong woman. :) You can do this. Attitude is key, for sure. As the quote in my signature says..."you may have to fight a battle more than once to win it"...but you WILL win! Best wishes to you!!!

GFinDC Veteran
GFinDC
Posted

Hi Fran,

Congrats on your progress! I am sure you have the stuff to beat gluten if you can do chemo and come out on top.

I want to share this link with you about the Eat to Defeat cancer campaign. Dr. William Li did some research on angiogenesis and found that many foods we eat have angiogenesis effects. Some of them are more powerful than commercial anti-cancer drugs. He founded a non-profit to sign up 1 million volunteers to follow the diet. It is not a gluten-free diet but you can just avoid the gluten items. Signing up is free and then you can access the list of foods and the info on them. There is a TED-Talk video on the site that explains his research.

Anyway, might be helpful is all.

Congrats again and you can do it! :)

Open Original Shared Link

fran641 Contributor
fran641
Posted
  • Author

Mr., I have heard of Dr.Li, thanks for the website I will check it out today.

Fran

fran641 Contributor
fran641
Posted
  • Author

Just caught my breath after getting home from gastro docs office.

He doesn't think it is pancreatic cancer because I have no symptoms of that. He isn't sure if it's related to lymphoma but doesn't think so because lymphoma responds so well to chemo and I just finished that in January. The PET the first week of May showed a "change in density on the head of the pancreas". He won't know if that is solid as in a tumor or fluid. I am scheduled for the endoscope and biopsy next Friday, the 27th. He is doing at the Tallahassee Hospital instead of his Center which makes me feel better. Since I'm a weenie he said not to worry I will be out like a light.

So the beat goes on and I so appreciate all the support I get from you guys around here.

Much love, Fran :rolleyes:

IrishHeart Veteran
IrishHeart
Posted

Fran,

I send you good vibes, best wishes and a giant cyber-space hug...keep us posted!

Hang tough, warrior princess ;)

IH

fran641 Contributor
fran641
Posted
  • Author

Warrior Princess!!! I love it..lol This old chick feels young with that title.:)

Thanks fran

Fran,

I send you good vibes, best wishes and a giant cyber-space hug...keep us posted!

Hang tough, warrior princess ;)

IH

IrishHeart Veteran
IrishHeart
Posted

Warrior Princess!!! I love it..lol This old chick feels young with that title.:)

Thanks fran

It's what I call myself--and any woman I know --who has survived many battles... ;)

fran641 Contributor
fran641
Posted
  • Author

LOL, sorry I didn't pay attention that it was your sig line. A whole tribe of warrior princesses, what power that portrays!

Take care, fran

It's what I call myself--and any woman I know --who has survived many battles... ;)

IrishHeart Veteran
IrishHeart
Posted

LOL, sorry I didn't pay attention that it was your sig line. A whole tribe of warrior princesses, what power that portrays!

Take care, fran

Hang in there, kiddo!! ;)

fran641 Contributor
fran641
Posted
  • Author

I am so happy that today is #3 of being gluten free. We are having dinner with a friend tonight with some other couples. She called me to check what foods I can not eat. I almost cried because I just shared with her a few days ago how hard it has been getting back on track with the foods. Once I made the decision to take the gluten back out of my life the old good patterns came back. Tell people what my needs are and not feel guilty about it.

We are going away overnight and staying with friends who are not gluten free. I am taking foods with me so I can have something I enjoy eating while they eat other foods like I used to do.

Thanks to all of you for helping me remember why I am doing this.

IrishHeart Veteran
IrishHeart
Posted

Sounds like fun...have a good visit and remember...it's simple, you are doing this for FRAN!! :)

fran641 Contributor
fran641
Posted
  • Author

I slept almost all day yesterday after getting home from the hospital. Doc said the pancreas looks good but he took a biopsy of pancreas and liver. The "density" that showed up on the PET seems to be a blockage in the upper intestine where the stomach empties. That opening should be 5 and is about 1. He biopsied that blockage. That didn't show on my January PET but did in May. I go back to him next Wed and hopefully the biopsy reports will be back and discuss treatment.

I have been gluten free since I posted here last week. YEAH!

Thanks for all your kind words and many prayers.

IrishHeart Veteran
IrishHeart
Posted

Stay the course, Fran---you're doing great! hope the report is good.

I hold you in my thoughts!!

fran641 Contributor
fran641
Posted
  • Author

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

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