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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hello, I think I'm on the right site. My dad died of Non Hodgkins B cell Lymphoma when he was 67 years old. I am 70 and take good care of myself after watching most of my family die of cancer. I recently had pre op work for meniscus surgery I recently had and although blood work was normal, my lymph nods on my neck were thickened, had ultra sound. I was told it was nothing maybe some slight infection somewhere and watch for 6 weeks. Last Sunday I woke up feeling like crap and about midday developed a 101.2 fever. I rarely get sick. The thing that bothered me the most was my lower abdomen was throbbing! It felt like when I used to ovulate. Talked to my doctor who said if it was cancer symptoms wouldn't go away so watch it for a few days. The fever is gone but pain in lower abdomen is still there especially after eating. Also my stomach was very distended so measured my waist and put on 2 inches since the last time I checked but haven't gained any weight. I remember my dad saying he looked like he was pregnant! Am I just being paranoid or should I push doctors for more tests?

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@saucy

Hello, I think I'm on the right site. My dad died of Non Hodgkins B cell Lymphoma when he was 67 years old. I am 70 and take good care of myself after watching most of my family die of cancer. I recently had pre op work for meniscus surgery I recently had and although blood work was normal, my lymph nods on my neck were thickened, had ultra sound. I was told it was nothing maybe some slight infection somewhere and watch for 6 weeks. Last Sunday I woke up feeling like crap and about midday developed a 101.2 fever. I rarely get sick. The thing that bothered me the most was my lower abdomen was throbbing! It felt like when I used to ovulate. Talked to my doctor who said if it was cancer symptoms wouldn't go away so watch it for a few days. The fever is gone but pain in lower abdomen is still there especially after eating. Also my stomach was very distended so measured my waist and put on 2 inches since the last time I checked but haven't gained any weight. I remember my dad saying he looked like he was pregnant! Am I just being paranoid or should I push doctors for more tests?

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I definitely would follow through with your doctors and push for more testing! My best friend had that same thing happen to her abdomen about 18 years ago. She had to go through so many doctors to find out what was causing it. She was finally diagnosed with non-Hodgkins disease. I want to give you hope and tell you that she is still alive and living a full life since that diagnosis. She has had chemo a few times but always came back from it, as hard as it was. She exercises and always eats very healthy. She knows that she will always have it but she does everything to fight that disease!!! She has succeeded! All of my best wishes for you, and please be encouraged by my friend’s story. However, definitely investigate further! MaryAnn from Boston

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@mabfp3

I definitely would follow through with your doctors and push for more testing! My best friend had that same thing happen to her abdomen about 18 years ago. She had to go through so many doctors to find out what was causing it. She was finally diagnosed with non-Hodgkins disease. I want to give you hope and tell you that she is still alive and living a full life since that diagnosis. She has had chemo a few times but always came back from it, as hard as it was. She exercises and always eats very healthy. She knows that she will always have it but she does everything to fight that disease!!! She has succeeded! All of my best wishes for you, and please be encouraged by my friend’s story. However, definitely investigate further! MaryAnn from Boston

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Thanks you! some people react really well to chemo, my dad did not! Had blood work yesterday so waiting for results, I've had to chase after this, doctors want to wait and see!

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@colleenyoung

Hi @maisyann, welcome to Connect.
I'm tagging @kjs1015 @aamarion @diana63 @djzlady96 to see if they will return to talk about their experiences with Non Hodgkin's lymphoma.

Maisy Ann, when were you diagnosed? What treatment are you getting or have you had?

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First of all, I was diagnosed 20 yrs ago, I am still under Specialist monitoring every year and I am glad to say I am still ok.
At the time it was a shock to me and our family, and the first question was WHY? The Dr and the Specialist put it down to one of those things that nobody knows why. In the first 6 months I had chemotherapy which consisted of me going to the hospital for 3 hrs to get a drip going into my veins from memory every week. Just as they told me my hair from one day to the next came out in clamps, that was rather shocking, I was having a shower as usual but as I rub shampoo on my head I started to get clamps of hair in my hands. Following this treatment the Specialist decided that we needed to up the doses but to be able to do that the chemo was going to be administered in hospital so for about 6 months I had to stay in hospital overnight and all night get a drip into my veins. All this eventually passed. The long and the short is that since I have not signs of the NON Hodgkings lymphoma, at the time I remember the prednisone and the one that fixed me up was a South American Amazon drug called Mabthera or something like it. After 20 yrs I count my blessing and I idolise my Specialist who I continue to see every year so anybody who has NON HODGKINS lymphoma look at the issue with lots of positivity, believe in the power of your mind and the experience of the Specialist treating you
Wish you the best

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@saucy

Hello, I think I'm on the right site. My dad died of Non Hodgkins B cell Lymphoma when he was 67 years old. I am 70 and take good care of myself after watching most of my family die of cancer. I recently had pre op work for meniscus surgery I recently had and although blood work was normal, my lymph nods on my neck were thickened, had ultra sound. I was told it was nothing maybe some slight infection somewhere and watch for 6 weeks. Last Sunday I woke up feeling like crap and about midday developed a 101.2 fever. I rarely get sick. The thing that bothered me the most was my lower abdomen was throbbing! It felt like when I used to ovulate. Talked to my doctor who said if it was cancer symptoms wouldn't go away so watch it for a few days. The fever is gone but pain in lower abdomen is still there especially after eating. Also my stomach was very distended so measured my waist and put on 2 inches since the last time I checked but haven't gained any weight. I remember my dad saying he looked like he was pregnant! Am I just being paranoid or should I push doctors for more tests?

Jump to this post

I have a blood test every year, there are so many things a blood test can find out, get your Dr to send you for blood tests, if the blood count is off, then, that would be a good indication that more tests need to be done.
If the white cells increase significantly means your body is trying to fight something, be positive that whatever it is you will fight it and win the fight.
Keep up the questioning of your treating Dr

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@saucy

Hello, I think I'm on the right site. My dad died of Non Hodgkins B cell Lymphoma when he was 67 years old. I am 70 and take good care of myself after watching most of my family die of cancer. I recently had pre op work for meniscus surgery I recently had and although blood work was normal, my lymph nods on my neck were thickened, had ultra sound. I was told it was nothing maybe some slight infection somewhere and watch for 6 weeks. Last Sunday I woke up feeling like crap and about midday developed a 101.2 fever. I rarely get sick. The thing that bothered me the most was my lower abdomen was throbbing! It felt like when I used to ovulate. Talked to my doctor who said if it was cancer symptoms wouldn't go away so watch it for a few days. The fever is gone but pain in lower abdomen is still there especially after eating. Also my stomach was very distended so measured my waist and put on 2 inches since the last time I checked but haven't gained any weight. I remember my dad saying he looked like he was pregnant! Am I just being paranoid or should I push doctors for more tests?

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You aren’t being paranoid. Go to a specialist hematology oncologist for testing. If you have an indolent form you can watch and wait but aggressive forms causing symptoms need treatment. Your symptoms and especially your intuition warrant investigation.

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I have non Hodgkins low grade B cell lymphoma/leukemia. Had it since 2019. It is a watch and wait Cancer. Nerve racking with Flu, Covid etc going around.

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It so far turns out I had a bad UTI but keeping an eye on things! Thanks for all the comments.

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I was diagnosed in 2019 with a brain tumor. Upon biopsy they found Diffuse Primary Large B Cell Non Hodgkin CNS Lymphoma. I had 5 1/2 months of in patient high dose chemotherapy followed by a stem cell transplant. I have been in remission and a watch a wait pattern since the end of 2020. I have been having severe headaches and nausea. My doctor ordered a STAT CT scan and found that I know have Giliosis. Does anyone know Is it true that the Giliosis acts like a brain tumor? If so, I am understating my symptoms then. Has anyone else experienced this?

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@gmal261

I was diagnosed in 2019 with a brain tumor. Upon biopsy they found Diffuse Primary Large B Cell Non Hodgkin CNS Lymphoma. I had 5 1/2 months of in patient high dose chemotherapy followed by a stem cell transplant. I have been in remission and a watch a wait pattern since the end of 2020. I have been having severe headaches and nausea. My doctor ordered a STAT CT scan and found that I know have Giliosis. Does anyone know Is it true that the Giliosis acts like a brain tumor? If so, I am understating my symptoms then. Has anyone else experienced this?

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@gmal261, I'm sure that was disconcerting to hear that you have gliosis.

"Gliosis occurs when your body creates more or larger glial cells (cells that support nerve cells). These new glial cells can cause scars in your brain that impact how your body works. Though they are not brain tumors, necrosis and gliosis can cause symptoms similar to brain tumors." (https://umiamihealth.org/en/sylvester-comprehensive-cancer-center/brain-tumor-initiative/reactive-gliosis-and-necrosis#:~:text=Gliosis%20occurs%20when%20your%20body,Depression)

You may want to connect with DMK here:
- Stable right temporal encephalomalacia with gliosis https://connect.mayoclinic.org/discussion/stable-right-temporal-encephalomalacia-with-gliosis/

Has treatment been suggested?

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