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Has anyone Had "Non Germinal" Large Diffuse B-Cell Lymphoma

Lym999
Posts: 34
Joined: Feb 2020

Has anyone else had Large Diffuse B-cell Lymphoma that was dianosed as "Non-Germinal" I know it is rare compared to Germinal and I am curious if anyone else had that? I had to take another drug Revlimid for ten days after each of my six treatments to compensate for it being Non-Germinal. This is why they called my treatment 2 R-Chop than just R-chop. I know before Revilmid non-germinal people had a worse prognosis than others with Germinal. If anyone experienced this or knows anything about it I would love to hear from you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

This article has a multitude of embedded articles concerning non-germinal large B disease.    

To open link, HIGHLIGHT the link, then click on "Go to......."

 

https://pubmed.ncbi.nlm.nih.gov/30407302/

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Lym,

It is natural and beneficial to research the particulars of a diagnosis, but too much focus on 'my strain is WORSE,' or 'my strain is better' is probably mis-spent emotional energy.  All of these liklihoods and generalities are just that: statistically common trends. What a given individual will experience is unknowable in advance.   

Non-germinal is, statistically, similiar to having T-cell disease: quite RARE and without definitive protocols to treat.   The most efficient focus in a case like that is to get a hematologist who is subspecialized specifically in non-germinal disease.   This will be more expensive, which is prohibitive for some people, and some insurances will or will not pay a differential to see such an authority, but doing so is recommended in a case such as yours.   I hope you have the resources to do so,

max

 

Lym999
Posts: 34
Joined: Feb 2020

Thanks, Max, This is why I had to take 10 days of Revlimid after each chemo treatment. It used to be a worse prognosis with Non-Germinal, but with the Revlimid, it makes my prognosis as good or even better than ones who have just Germinal. I am curious if there are any others out there who had Non-Germinal Diffused Large B-Cell. 

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