Treatment Options For Linitis Plastica???

Hello everyone,

My sister-in-law Donna was diagnosed with stage IV linitis plastica last week.  Two weeks prior, she was diagnosed with stage III, however, further scans indicated that the cancer had metastasized to her vertebrae (both the upper and lower portions).  She is only 44 years old and has always been very healthy and energetic, so this of course came as an incredible shock.  She had been complaining of pain in her stomach and back for 3 months before the diagnosis, and had undergone many tests during those 3 months...all of which showed nothing.  So to find out she had cancer and that it was this progressed has been devastating.  Basically, I am trying to help her in any way I can....to find out which treatments may be the most beneficial; is nutrition a key, etc.  Has anyone ever heard of the benefits of a macrobiotic diet?  I am desperate to help her.  She is not aware of the grim statistics involved with her diagnosis -- she said the doctors are not God and her fate does not lie in their hands, so when they asked her if she wanted to know the statistics, she said no.  She is determined to win the battle against this awful disease, and I want to help.  She has an incredibly positive attitude.  However, she has expressed some reluctancy to try alternative medicine, which I feel is a very hopeful avenue for her.  She believes that chemo is her best option at this point, but I am aware that it is just buying her time and would like to steer her to a more proactive path.  Any suggestions, advice, information would be most appreciated.  Also, please pray for her.  I know there are many others out there suffering from this terrible disease, and I believe that prayer and hope can do amazing things.  I pray for all of you who have this disease and those who have a loved one or friend who are fighting it.  Thanks for any advice you may have.

On 4/14/2008 helpfordonna wrote:

Hello everyone,

My sister-in-law Donna was diagnosed with stage IV linitis plastica last week.  Two weeks prior, she was diagnosed with stage III, however, further scans indicated that the cancer had metastasized to her vertebrae (both the upper and lower portions).  She is only 44 years old and has always been very healthy and energetic, so this of course came as an incredible shock.  She had been complaining of pain in her stomach and back for 3 months before the diagnosis, and had undergone many tests during those 3 months...all of which showed nothing.  So to find out she had cancer and that it was this progressed has been devastating.  Basically, I am trying to help her in any way I can....to find out which treatments may be the most beneficial; is nutrition a key, etc.  Has anyone ever heard of the benefits of a macrobiotic diet?  I am desperate to help her.  She is not aware of the grim statistics involved with her diagnosis -- she said the doctors are not God and her fate does not lie in their hands, so when they asked her if she wanted to know the statistics, she said no.  She is determined to win the battle against this awful disease, and I want to help.  She has an incredibly positive attitude.  However, she has expressed some reluctancy to try alternative medicine, which I feel is a very hopeful avenue for her.  She believes that chemo is her best option at this point, but I am aware that it is just buying her time and would like to steer her to a more proactive path.  Any suggestions, advice, information would be most appreciated.  Also, please pray for her.  I know there are many others out there suffering from this terrible disease, and I believe that prayer and hope can do amazing things.  I pray for all of you who have this disease and those who have a loved one or friend who are fighting it.  Thanks for any advice you may have.

Hello,

  I am very sorry to hear about your sister-in-law's recent diagnosis, however, I'm glad to hear of her positive atitude and clear thinking. She's right, doctors are not God and no man can foresee the future. I would be supportive of whatever treatment option she chooses...it's her body. However, she needs to be completely informed as to what her options really are.

  If she chooses chemo, there are a number of different options. Offhand I can only think of DCF and ECF. If you search "chemo linitis plasica" or maybe just "chemo gastric" in the search box in the upper right hand corner, you should find some threads where people discuss different chemo regimens. Write down all of them and tell her to ask about them at her next appointment.

 You didn't mention her weight or eating habits....keeping weight on and being well nourished are really important for her body to fight! When my dad needed extra calories, we gave him Ensure Plus, made him milkshakes and used cream whenever possible! There are also many threads that discuss recipes and ideas to add calories to the diet.

 Most importantly, pray for her. I will pray for Donna and her family tonight.

Thank you so much for your message and your prayers. 

Since I posted that message, we have found out that the cancer has metastasized to her breast, hip, femur, sternum, ribs, and pelvic region.  The doctors are now questioning if breast cancer could be the primary and gastric secondary so they are running tests and told her that her entire chemo regimen could be changing.  Although it's awful news to learn of additional metastasis, the doctors said that if the breast cancer is primary, she will more than likely have a better prognosis.  So with all bad news, you have to search for the silver lining, and this would be it.  We're hoping for a much better prognosis and treatment plan.

Donna has lost about 40 pounds and doesn't eat very much because she feels full after only a few bites.  Thank you for your tips on weight gain.  I'll pass them along to her.

I am so sorry that your father had to suffer with this horrible disease.  Although it must be difficult for you to talk about, you still reach out to help others, which says a lot about your character.  Thank you for reaching out.  I'll pray for you too.