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Ravensara's Message Board Messages

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OMG! Allergic to Immodium!  My new GI Dr. ordered genetic testing for Crohn's and I am negative.  He says the Asacol won't help and told me not to take it.  It has been a few weeks and I haven't noticed much any difference.  However he did recommend Metamucil or some othe psyllium fiber supplement so I am trying that now.

I agree re steroids - think I'd rather have diarrea!

Interesting about the 50mg dosage.  I'm going to ask my doc about that.

Thank you! I will try it.  I have a greek yogurt  fruit smoothie every am and I'm always ok til lunch or dinner.

I am starting my 4th year on Tarceva.  The primary issueas I continue to have are intestinal issues and dry skin issues.  I initially had some rash.  I had heard of some individuals taking a 3 day break and the rash did not return.  This proved to be the case with me.  I still get the ocaisionnal mouth sore.

For the diarrhea - basically low fiber, no fresh fruits or veggies.   If you do eat them take an immodium and gas-x first!  Juicing has helped.  If it's acute try over cooked rice/ pasta for a few days. Cook veggies until soft. NO POPCORN.  Soups are good.  Metamucil helps.  My issues did improve after a while and I can eat some fresh fruits and salads now.  For some reason I can eat spring greens but not iceburg lettuce.  Pickles and saurkraut really mess me up.  Take a multi vitamin because it's hard to get all nutrients from the food.

For a while it was thought that I had Crohn's Disease but the current thinking is that it's just Tarceva but treating the problem as if it's Crohn's has helped.  I take a drug called Asacol morning and afternoon.  That seems to help some.

For a while I was taking an opioid painkiller, taramadol and experienced almost no diarrhea or stomach cramping but it's gotten much harder to get Dr.s to prescribe it.

For the dry skin - cetaphil products are good.  Cocoa butter. The skin is moisture starved so misting/bathing and then sealing the moisture in is what is needed.  Just recently found a good Mary Kay lotion that is excellent for this purpose.  For the little edge of the fingernail sores here is a link for the only thing that has ever worked for me: http://lungevity.org/l_community/viewtopic.php?f=38&t=50 I have also had the same issues with toe nails resulting in infections.  Soak feet in water and epsom salts 2x daily at first sign of pain and then moisturizer.

For the hair - I have been adding straight up avacado oil to my conditioner.  Hair isn't greasy at all!  Also leave in conditioners are good.

I hope some of my experiences and suggestions are useful to somebody here.

Best wishes and hopes to all.

Jackie

I experienced such a metastasis 3 1/2 years ago.  I underwent radiation and have been taking a maintenance chemo pill - Tarceva.  The treatment killed my thyroid and I must take levothyroxin o treat that.  I currently have no other evidence of disease and my Dr. thinks if I remain disease free for 2 more years I may be able to stop taking Tarceva.

I didn't see what form of cancer you have.  Hope this helps answer your question.

Jackie

Such delightful news, Laura.,  SO glad to hear how well you are doing!  Hearing positive scan results is absolutely the best the spirit lifter, ever.

Jackie

On May 28, 2013 3:52 PM lstewart wrote:

On May 28, 2013 3:45 PM KimmieAnne wrote:

Good Morning! I am Kim and I have IV NSCLC diagnosed in 2003 (given 2-3 years to live) and here I am today!  I had two years of chemo, 6 months of radiation, took Irressa for 6 months and changed to Tarceva.  I have been able to take Tarceva 150 mg successfull for the past six (6) years!  Tarceva is a miracle drug and I am so grateful!

My cancer metastisized to my lung lining and the Tarceva has shrunk the size of the mets.

This is my miracle drug!

 

 

Hi Kim ~  This is GREAT news and you are a testament to God's grace and mercy!!  Thank you for signing in for all to see how well Tarceva is working.  It makes my day and gives so many hope!!  God Bless!!

Laura

Thank you for ewsponding and asking how I'm doing.  There is still currently no evidence of disease.  My Dr. thinks that I may be able to stop taking Tarceva in a few years if my scans continue to stay clean!

Kim - 6 years is amazing!  So ha[[y for you.  Taeceva truly is a miracle drug!

How are you doing, Laura?

Jackie

On May 28, 2013 2:30 AM lstewart wrote:

On May 25, 2013 1:39 PM Ravensara wrote:

I have been NED on Tarceva for the 3 years I have been on it.  There was some rash initially but saw a suggestion to take a 3 day break and the rash went away.  I still get a red spot or mouth sore from time to time.

My big problem is gastrointestinal to the point of a 10 day hospitalisation and a Crohn's diagnosis a year ago.  Daily struggles with stomach cramps and diarhea.  I've had to completely eliminate caffiene.

I like Cetaphil products for the dry skin issues.  Tried many things and always return to that.

Here is what I devised to treat those painful fingertip splits:

After trying uncounted multitudes of things to treat those nasty little splits  at the corners of my fingertips I developed the following recipe/procedure. You can get these ingredients at most pharmacies and grocery stores. If I do this several times/week the splits never come.

1 c. distilled water or aloe vera juice (not gel)
1/4 c. glycerin
1/8 c. good oil (e.g. evening primrose, jojoba, sweet almond, olive)
a few drops essential oil, if desired. Calendula extract is good, too, but basic recipe works fine.
unpowdered disposable gloves. I like the blue nitrile ones the best and can get large boxes of them at BJs

Combine all ingredients in spray bottle. Shake well for each use and spray 5-10 times into the gloves. (put on gloves) I wear them overnight but even a few hours/day is good.

If you have problems with your toes, the way I did (several infections) daily soaks in Epsom salts at the first sign of pain always works. Also gel booties sold at bed bath and beyond are nice.

Hope it works for you the way it does for me!
Jackie

Hi Jackie ~  This is great info and thank you.  If you don't mine me asking what is NED?  Also since you have been on it for 3 years how is your cancer going?

 

God Bless!!

 

Laura

Thank you for ewsponding and asking how I'm doing.  There is still currently no evidence of disease.  My Dr. thinks that I may be able to stop taking Tarceva in a few years if my scans continue to stay clean!

How are you doing, Laura?

Jackie

I have been NED on Tarceva for the 3 years I have been on it.  There was some rash initially but saw a suggestion to take a 3 day break and the rash went away.  I still get a red spot or mouth sore from time to time.

My big problem is gastrointestinal to the point of a 10 day hospitalisation and a Crohn's diagnosis a year ago.  Daily struggles with stomach cramps and diarhea.  I've had to completely eliminate caffiene.

I like Cetaphil products for the dry skin issues.  Tried many things and always return to that.

Here is what I devised to treat those painful fingertip splits:

After trying uncounted multitudes of things to treat those nasty little splits  at the corners of my fingertips I developed the following recipe/procedure. You can get these ingredients at most pharmacies and grocery stores. If I do this several times/week the splits never come.

1 c. distilled water or aloe vera juice (not gel)
1/4 c. glycerin
1/8 c. good oil (e.g. evening primrose, jojoba, sweet almond, olive)
a few drops essential oil, if desired. Calendula extract is good, too, but basic recipe works fine.
unpowdered disposable gloves. I like the blue nitrile ones the best and can get large boxes of them at BJs

Combine all ingredients in spray bottle. Shake well for each use and spray 5-10 times into the gloves. (put on gloves) I wear them overnight but even a few hours/day is good.

If you have problems with your toes, the way I did (several infections) daily soaks in Epsom salts at the first sign of pain always works. Also gel booties sold at bed bath and beyond are nice.

Hope it works for you the way it does for me!
Jackie

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About Ravensara

Survivor
Lung Cancer - Adenocarcinoma, Lung Cancer - Non-Small Cell
After Treatment, Alternative Treatments, Cancer Nutrition, Clinical Trials and Research, Diet, Emotional Support, Lifestyle, Recipes, Side Effects, Spiritual Support, Supplements

I am a 5 year survivor. I was diagnosed with stage 3b non small cell adenocarcinoma in January 2008. A tumor in my upper right lobe was found when I requested a chest xray during a routine physical. It was found to have spread to several lymph nodes and I was deemed to not be a candidate for surgery. After treatment with 6 weeks of chemo and radiation I became a candidate for surgery and my upper right lobe and several lymph nodes were removed. They thought they got it all but 2 years later some lymph nodes in my neck showed up in a PET scan (missed by CAT scans btw). So 6 weeks of radiation and then Tarceva. 3 years have passed and I am pretty healthy. I stuggle with some of the side effects of Tarceva but am very grateful that this medication exists and that I have decent medical insurance to pay for it.

All things considered, I am a very, very lucky woman.

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