Non Hodgkin's lymphoma

@jjohnson8747 Look, my friend, you may think I'm nuts for suggesting this and I probably am nuts anyway. But What I am going to suggest has helped me a lot, although I don't think I have the same crud you have. I first realized that I had something systemically wrong with me when I was about 6 or 7 years old. A doctor, who was also a personal friend of the family, suggested that I might want to write this stuff down so I could mention later if I needed to. Besides, he said, it will give you a little control over your body and your health. So I did, at least off and on, now for 70 years. And now I am nearing the end, and if nothing else, I can spit out the details of having these pages all this time, and what has worked and not. Anyway, it makes me feel a little stronger that I am now able to tell my children, grandchildren and great-grandchildren what is happening to me and will one day happen to them. So I suggest to everyone with a very serious disease as my Gelsolin is and your lymphoma is, write it down. At least your families will be able to know what your are thinking and feeling as you go through this ordeal, and what you have felt was important. My daughter in law passed on with NHL about 10 years ago, And I still learn something from her almost every day. Such as, when the harpist came to her house and played for a couple of hours, did that help her? She could not write it down but I could see that it helped dramatically. You can have a copy of my story free at https://bit.Ly/1w7j4j8 under "Amyloid and Old Karl." Be at peace with your heart and mind. Old Karl

@jjohnson8747 You need to try and eat small amounts of food several times a day. I have the same issues when I eat. I noticed when I eat like a bird. Those symptoms go away. Hematology tells me to see the GI department that it has nothing to do with Lymphoma I say it does like you. Sighing. Tomorrow I have an appointment with my Gi Dr. I get acid reflex so bad it feels like swords are going down my throat. Doc's claim it's Gerd and I need to take 40 ml of Omeprazole 2 times whether i eat or not to halt the burning sensation and the stabbing chest pains.

Hi, I'm looking for ideas. I have follicular nhl. Had chemo . Iwas doing well. I can tell it's coming back.. last time I was full both above and below my diaphram. What is going now is causing a lot of trapped intestinal gas and has slowed down my bowels. I'm taking miralax which helps with my bowels. Not the trapped gas. I've tired extra strength gasex. Helps a little. Does anyone have suggestions?

@jjohnson8747 You need to try and eat small amounts of food several times a day. I have the same issues when I eat. I noticed when I eat like a bird. Those symptoms go away. Hematology tells me to see the GI department that it has nothing to do with Lymphoma I say it does like you. Sighing. Tomorrow I have an appointment with my Gi Dr. I get acid reflex so bad it feels like swords are going down my throat. Doc's claim it's Gerd and I need to take 40 ml of Omeprazole 2 times whether i eat or not to halt the burning sensation and the stabbing chest pains.

@jjohnson8747 Look, my friend, you may think I'm nuts for suggesting this and I probably am nuts anyway. But What I am going to suggest has helped me a lot, although I don't think I have the same crud you have. I first realized that I had something systemically wrong with me when I was about 6 or 7 years old. A doctor, who was also a personal friend of the family, suggested that I might want to write this stuff down so I could mention later if I needed to. Besides, he said, it will give you a little control over your body and your health. So I did, at least off and on, now for 70 years. And now I am nearing the end, and if nothing else, I can spit out the details of having these pages all this time, and what has worked and not. Anyway, it makes me feel a little stronger that I am now able to tell my children, grandchildren and great-grandchildren what is happening to me and will one day happen to them. So I suggest to everyone with a very serious disease as my Gelsolin is and your lymphoma is, write it down. At least your families will be able to know what your are thinking and feeling as you go through this ordeal, and what you have felt was important. My daughter in law passed on with NHL about 10 years ago, And I still learn something from her almost every day. Such as, when the harpist came to her house and played for a couple of hours, did that help her? She could not write it down but I could see that it helped dramatically. You can have a copy of my story free at https://bit.Ly/1w7j4j8 under "Amyloid and Old Karl." Be at peace with your heart and mind. Old Karl

Some ideas- keep a detailed food journal, take max doses of the simethicome and mylanta, avoid known gas producers like brocoli, legumes, dairy for some people, etc. I do all that and still have gas, but I find it helps. Good luck. gp

I had radiation on my neck. I didn't have any side effects at all.

Thank you. Has anyone had the experience of this getting better as your body adjusts? So far it’s getting worse, not better. Also the severe weakness that has made it difficult to do anything but stay in bed. So discouraging. Another 5 months of this is hard to face. Anyone facing decision to do stem cell transplant versus maintenance chemo? Thoughts?