Gastric Linitis Plastica

Does anyone know of anyone who has had linitis plastica type of stomach cancer? My husband was diagnosed in August 07, had a total gastrectomy followed by a very aggressive chemoradiation, he was a stage III and right now is presumed to be in remission. He is struggling daily with what he can eat and trying to keep down, and attempting to keep weight on his already thin frame. He could eat almost anything after surgery, but since radiation (and its been 5 months since completion) it is a struggle everyday to eat. It was much better for several weeks, he was able to come off his TPN, but now suddenly, he has a much more difficult time eating and is losing weight ( he has none to lose) His fear is a malignant stricture, but I think it is much too soon for anything to have reoccurred. We will see his oncologist this next week, but I was wondering if anyone else has experienced this, It as though the food will not "go down" or gets "stuck"  and he throws it back up. 

He had a jejunostomy tube after surgery and through radiation, but there were complications with that and it caused severe abdominal cramping and he still ended up malnourished and hospitalized, so very expensive TPN is his only option if he cannot eat, and then he is "tied" to an IV pole.

It is all so discouraging, he was only 50 and extremely active and healthy at the time of diagnosis. Now, the cancer treatments are over, presumably curative (God willing), yet he fights malnutrition, hunger, fatigue and weakness daily. Are we expecting too much too soon? Chemo ended in January and radiation ended in November, and it was radiation that started all the problems.

I am so thankful to find this site,  I've not been able to talk to others affected by this horrible disease. Any suggestions, ideas or thoughts?

Thanks!

Hello. I cannot offer much advice as my husband also 50 was diagnosed in October 2007. He has only had chemo and no radiation but he also has that stuck-chocking feeling. Our doctor said it is an effect of no stomach, but I don't know for sure. All I do know is that its getting worse. What is going on? Why are younger people getting this terrible disease? It makes me so mad that the government allows bad preservarives in our foods that are most likely causing these problems. Its very sad that family's have to deals with this because of their greed. I'm sorry if I'm going on and on but ever since October my life has changed so much and all because of this awful CANCER!

Thanks for the reply... 

I understand wanting to rant, this is terrible disease, and what it does to quality of life. It is interesting though, that your husband has not had radiation but still experiences this. We saw that it started with radiation, but who knows. I don't think anyone really knows what causes it. I just know we desperately need a solution.

Best wishes to you and your husband.

 

 

On 4/6/2008 lissa01 wrote:

Does anyone know of anyone who has had linitis plastica type of stomach cancer? My husband was diagnosed in August 07, had a total gastrectomy followed by a very aggressive chemoradiation, he was a stage III and right now is presumed to be in remission. He is struggling daily with what he can eat and trying to keep down, and attempting to keep weight on his already thin frame. He could eat almost anything after surgery, but since radiation (and its been 5 months since completion) it is a struggle everyday to eat. It was much better for several weeks, he was able to come off his TPN, but now suddenly, he has a much more difficult time eating and is losing weight ( he has none to lose) His fear is a malignant stricture, but I think it is much too soon for anything to have reoccurred. We will see his oncologist this next week, but I was wondering if anyone else has experienced this, It as though the food will not "go down" or gets "stuck"  and he throws it back up. 

He had a jejunostomy tube after surgery and through radiation, but there were complications with that and it caused severe abdominal cramping and he still ended up malnourished and hospitalized, so very expensive TPN is his only option if he cannot eat, and then he is "tied" to an IV pole.

It is all so discouraging, he was only 50 and extremely active and healthy at the time of diagnosis. Now, the cancer treatments are over, presumably curative (God willing), yet he fights malnutrition, hunger, fatigue and weakness daily. Are we expecting too much too soon? Chemo ended in January and radiation ended in November, and it was radiation that started all the problems.

I am so thankful to find this site,  I've not been able to talk to others affected by this horrible disease. Any suggestions, ideas or thoughts?

Thanks!

Hi, I had problems eating, with energy etc as well after surgery and chemo.  I lost 40 pounds too.  I did not have radiation.  I also had stage three stomach cancer.  Had 80% of my stomach removed in November and during surgery had heated chemotherapy which lasted for 5 days after.  I expereinced very similar problems: cramping, extreme pain, vomiting etc and lost hope for a little while.  I'm on my last cycle of chemo now.  I eat really well now because of some of the remedies and overall lifestyle changes.

What I did to increase my energy and appetite was: take a Vit B12 pill every day; take a Ph balance pill everyday (this makes sure that your digestive system is not too acidic as this is what causes nausea); Most importantly: I took intervenous Vit C -- it is an expensive therapy but it worked...within a week I got so much energy and my appetite increased drastically.  I'm an active mom (with a 8 month old) and no one can tell that I went through so much right upto mid January (i was in the hospital for 40 days due to an infection).  As soon as I got out of the hospital, I started a few weeks later on the Vit C therapy.  I was literally only eating two tablespoons per meal, however, after a few of the Vit C therapies and watching that my food was mostly alkaline, I got my appetite and energy back.  I also made sure that no matter how tired I was, I got out for a walk.  Initially, I could only walk half a block. 

Hope this helps.  I just noticed that It has helped me realize how far I've come...thank you. 

Oh!  I just remembered what also REALLY REALLY helped me keep down my food initally, especially when I had extreme pain and felt like I had to throw up...it was club soda!  I have a club soda every day even today just in case, although I don't go through the same feeling. 

Don't loose hope...things will get better.  One last thing...my taste buds have changed since I had the operation so I had to completely change the way I cooked...I bought numerous recipie books to choose food that are low in fat, not spicy but tasty with lost of veggies.  Try to avoid sugars too as they make your digestive system very acidic.  Milk products too are very very had to digest, so I drink soy milk.  Yes, avoid milk products and you will see a huge change in the way your husband feels.  Milk will literally make me feel sick even today and even tired.  I always have a variety of healthy foods on hand as I find that my taste buds like that. 

As you can see, the surgery effects so much of one's life after, especially as it relates to food,  that it's impossible to give you a simple answer.  I had to use a lot of trial and error too, but now, only a few months later I eat like a pig:) 

Cheers

 

 

Sorry, just remembered that one other thing I take every day is 3000IU of Vit D everyday. 

My husband was diagnosed in February 2005 with stage IV gastroesophageal cancer.  His symptoms were the "food getting stuck" sensation.  Loss of alot of weight. He had partial gastrectomy (3/4 of stomach) and partial esophagectomy, chemo, radiation w/chemo and then chemo.  He was cancer free for two years.  In February 2007 cancer returned to the liver (4 cm lesion).  The stomach area looked nodular.  Taxol was given as chemo.  Liver lesion gone; too difficult to tell about stomach nodularity as CT is not a good modality for stomach cancer.  Was doing fine until this fall - food getting stuck sensation again. Vomiting; started losing weight again.  He was diagnosed with recurrent stomach cancer and passed away February 22, 2008.  He did have a malignant stricture which prevented food from passing into the stomach.  This was at the site of original cancer.  This can also be a symptom of esophagitis which can be treated.  Good luck when seeing your oncologist.  Please keep us informed.

Diane

Diane - I'm so sorry for your loss, and thank you for your reply, may I ask how old your husband was at the time of his original diagnosis? I don't know why it matters, I just keep seeing that this is not the 70+ age group disease the research says...I hope that is to all of the younger one's advantage, I don't know.

I appreciate everyone's responses. Tomorrow we see our gastroenterologist, a benign, radiation induced stricture is what is suspected, (I'll take that option) Somehow though, he is eating much better the last two days, carefully, but better. So maybe it is not a stricture at all. We will know more tomorrow. Thanks to everyone...I don't feel so alone in this now.

 Blessings to all

 

 

Lissa - Thank you for your condolences.  My husband was 58 at time of diagnosis - 61 when he passed.  By the way, a benign stricture can be stretched.  Hope that your husband's problem is something minor.  Good luck.

Diane

 

On 4/8/2008 Anniedips wrote:

My husband was diagnosed in February 2005 with stage IV gastroesophageal cancer.  His symptoms were the "food getting stuck" sensation.  Loss of alot of weight. He had partial gastrectomy (3/4 of stomach) and partial esophagectomy, chemo, radiation w/chemo and then chemo.  He was cancer free for two years.  In February 2007 cancer returned to the liver (4 cm lesion).  The stomach area looked nodular.  Taxol was given as chemo.  Liver lesion gone; too difficult to tell about stomach nodularity as CT is not a good modality for stomach cancer.  Was doing fine until this fall - food getting stuck sensation again. Vomiting; started losing weight again.  He was diagnosed with recurrent stomach cancer and passed away February 22, 2008.  He did have a malignant stricture which prevented food from passing into the stomach.  This was at the site of original cancer.  This can also be a symptom of esophagitis which can be treated.  Good luck when seeing your oncologist.  Please keep us informed.

Diane

Diane, I too am sorry to hear about your recent loss.  My wife had Stage IV in March of 07 and has been in remission post chemo alone.  IF you do not mind me asking, how long did your husband receive chemo post his surgery?  Just wondering since every experience teaches me a little more about my spouses disease; she is 43. 

Thanks, and again my thoughts and prayers are with you.

Steve

Hartford, CT

Steve, Thanks for your condolences.  My husband had his surgery February 4, 2005.  He started chemo in March 05 for five weeks, then chemo and radiation together for five weeks, then more chemo until July of 2005.  He was cancer free til February 2007 (mets to liver and nodularity at original GE junction cancer site) at which time they started him on Taxol.  Doctor said he would probably be on it the rest of his life.  November 20, 2007 she said she was going to give him a month break from chemo. He started having trouble swallowing again, started losing weight and when we returned in January to resume chemo, he was too weak.  He had a J tube placed February 13, but went downhill and passed on February 22.  He had alot of chemo.  He was so determined to beat this cancer that he used to weigh down his pockets with rolls of quarters so that he would make weight to receive chemo.  What a guy!!  I have been praying for your wife and for all the other people with whom I have corresponded on this board. 

God's blessings to you,

Diane