Non Hodgkin's lymphoma

Posted by maisyann @maisyann, Mar 22, 2016

Non Hodgkin’s lymphoma

Would like to find a support group in regards to non hodgkins lymphatic B cell.

@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

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@oldkarl

@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

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Thank you!

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@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.

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@travelgirl

@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.

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Thanks for the idea of eating smaller meals! That's something I haven't tried. Sorry to hear about your pain! Hope you can get some good information from your doctors. I have a pet scan at the end of September to check things out.

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@jjohnson8747

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?

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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

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@travelgirl

@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.

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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?

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@oldkarl

@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

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This was beautiful thank you for the advice the road I'm walking is tough

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@ginpene05

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

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Very helpful.

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@vonbaron36

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

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Me tooo

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@crissy2450

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?

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@crissy2450 So sorry your experiencing weakness. Have you discussed this with your Doctor? He or she should have some ideas for you. That should help you with the severe weakness. I found this article with suggestions from the Lymphoma society. You may want to try eliminating sugar and coffee from our diet. Plus try to exercise or walk as much as you can. I noticed when I'm sitting around too much that I have to force myself to walk, then my energy level increases. But please call you Dr. and discuss this with them.
http://www.lymphomation.org/side-effect-fatigue.htm
Hope your feeling better soon.
Jackie

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You are so right about the walking. You dont have to go far to feel better! Sometimes I just have to force myself to get out!

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@jjohnson8747

You are so right about the walking. You dont have to go far to feel better! Sometimes I just have to force myself to get out!

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@jjohnson8747 It's hard some days to push ourselves. I work from home and trust me it is so easy to be a couch potato. Which does not help at all. Since our lymph nodes are sluggish from the disease. We need to help get the fluids moving. Exercise does that. I try and get to the gym 3 times a week. ride the bike and walk the track there. Have you tried the livestrong exercise program for cancer patients? It is free and offered through your local YMCA. That program really helped me see my potential of what I was able to do after my diagnosis.
Here is the link for that.
https://www.livestrong.org/what-we-do/program/livestrong-at-the-ymca

Let me know if this help you?
Jackie

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@travelgirl

@jjohnson8747 It's hard some days to push ourselves. I work from home and trust me it is so easy to be a couch potato. Which does not help at all. Since our lymph nodes are sluggish from the disease. We need to help get the fluids moving. Exercise does that. I try and get to the gym 3 times a week. ride the bike and walk the track there. Have you tried the livestrong exercise program for cancer patients? It is free and offered through your local YMCA. That program really helped me see my potential of what I was able to do after my diagnosis.
Here is the link for that.
https://www.livestrong.org/what-we-do/program/livestrong-at-the-ymca

Let me know if this help you?
Jackie

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Thanks Jackie! I live in Minnesota and it's starting to cool off. I had trouble with the cold last winter. There is a YMCA about 2 miles from me, I'll check it out!

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@ginpene05

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

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I have the results of my pet scan. My Lymphoma is back and aggressive. Doctor thinks it may have morphed to large cell. Biopsies scheduled for this week. 🙁

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@jjohnson8747 Ugh I'm so sorry ..Last we spoke you were tired and dragging yourself to do things. Was that the only symptoms, you being tired?
I think though if I'm not mistaken, the lady across the hall from me the same thing happened to her.
She was given treatments and is fine today. She is in her very late seventies. It has been about 5 years now and she hasn't had another occurrence..
Hang in there stay positive and keep pushing yourself. I will pray it all works out for you..
Jackie

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