What should I expect from Non Hodgkin’s lymphoma diffuse large b cell germinal center?

Hi , as I had T-cell Lymphoma I can not talk with any first hand experience with regards to germinal center vs non germinal center so lets look for those who have any first hand experience in DLBCL like johnr.

Increasing and at times decreasing the number of cycles of chemo does happen a lot as these decisions are made based on mid treatment CTs.

Highlander ((hugs))

Hi here is a link to some useful information about dlbc and further down the page it talks about ABC dlbc or germinal centre B cell (GBC)

https://www.nhlcyberfamily.org/types/diffuse.htm

Until recently it was thought ABC dlbc had a worse outcome than GBC type dlbc however some recent studies have shown that gap has narrowed and some new work that was published last month has identified 4 new subtypes and within them only one has a worse outcome and is more challenging to treat. So the reality is at present knowing the type of dlbc would not change the treatment plan it would still be rchop and given the mid point scan would always be 8 rounds. So don't be angry, focus on helping your dad beat the disease first time round as rchop side effects are cumulative and fatigue and other issues will become more obvious now he is past the mid point.

hope this helps settle your worries

john

Thank you John R... I will definitely read that website. 

They are increasing the dosis of Rituximab, and you mentioned fatigue as a cumulative side effect, do you know what can be done to help with the fatigue? He is starting to feel really tired the weeks after chemo. 

Thank you so much 

short walks help counter the fatigue, but also actual rest and sleep helps to, I could drop off and be in a deep sleep for an hour and its just the body saying it needs to rest. Also make sure he is drinking plenty as dehydration can make fatigue worse.

John 

Totally with John on this as I did do lots of short walks and it did help my Fatigue

Thank you guys... I’ll invite him to walk with me outside at least daily.

Hi Valeria,

I completed 6 rounds of R-CHOP with Revlimid two weeks ago. My doctors couldn't determine whether I had ABC or GCB diffuse large B-Cell NHL because the biopsy sample was too crushed. As the ABC has a worse prognosis than GCB I was prescribed Revlimid which brings the recovery rate of ABC to the same level as GCB (and as I understand it, improves the GCB prognosis slightly).

Best wishes.

Thank you, is the revlimid also intravenous like the chemo or is it pills? 

I will mention this to the oncologist.  Hope you’re doing great and can beat this soon. Are you having radiations after chemo?

God bless 

Hi Valeria,

The Revlimid is given by way of pills - 1 pill taken daily for 14 days following each R-CHOP session though I didn't take it every cycle due to catching a cold and then having stem cells harvested.

I'll have radiation starting in June - 4 weeks, 5 days a week as it's in my bones - right femur and C6 vertebrae. A PET scan taken after the 4th R-CHOP session thankfully showed a complete metabolic response - so in remission. 

The worst part for me was the uncertainty at the start - once treatment began and I felt improvements in my knee I felt a lot better mentally. I documented my profile / story to date if you are suffering from insomnia!

Hello,

it’s been a crazy year.... my dad’s pet scan after those 8 rounds of rchop back in July 2018 showed no tumor al activity on liver nor mediastinum. However there were high numbers on the lungs were some very small nodes were found but no biopsy could be done because they were too small, so they did some tests to see if they were caused by fungi, tuberculosis etc and all cane negative. They decided to monitor and wait. 
Everything was fine; he was taking rituximab as a maintenance chemo every 2 months, went back to work, etc...Then in May this year he developed “allergies” symptoms— stuffy nose, watery eyes, congestion. He visited 3 otorhinolaryngologists who said he had sinusitis. He was scheduled for a nose surgery but we went on vacations first. However, after we came back from vacations, he started having horrible headaches, vomiting and talking nonsense. He refused to go to the doctor until a couple days later he fell in the shower. He was losing leg coordination and was talking more nonsense. They took him to the emergency room and unfortunately a good for nothing doctor hospitalized him and determined he had hyponatremia due to depression and lack of eating. It was true that dad was not eating consistently but it was because of the headaches. But the hyponatremia was caused by something else, which he couldn’t figure out. They brought sodium levels to normal and he went home, but symptoms worsened. He started hallucinating a lot and lost sphincter control, so his regular doctor finally saw him and ordered a chest x ray because he suspected the lymphoma came back and provoked SIADH (thus the hyponatremia) xrays showed nothing. Then he ordered many blood tests, brain mri and lumbar puncture. Blood tests showing nothing, brain mri showed nothing either but lumbar puncture showed cancer cells. He was hospitalized and now they wanted to find the tumor, so a new otorhinolaryngologist found a big tumor on his ethmoidal sinus which more than likely had broken the blood barrier and infiltrated the meninges, thus causing leptomeningeal metastasis. They did a biopsy of the tumor to see which type it was but that same day my dad went into a coma. 5 days later he stopped breathing and we decided to not use a ventilator. He died on September 19, 2019 and his symptoms started on August 8, 2019. 
I just don’t know how he went from good results on a PET scan to leptomeningeal disease in less than a year.