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No symptoms

betterment
Posts: 3
Joined: Feb 2019

Hello,

 

I am newly diagnosed with follicular (65% of sampled cells) and diffuse large b-cell lymphoma (35% of sampled cells).  The sample was provided via a fully excisional lymph node. There is also a medistinal mass.

Blood work was all normal except for: calcium in plasma at 10.8% in the comprehensive metabolic panel and beta-2 microglobin at 3.4/L.  LDH was normal.

Onc is recommending 4-6 cycles of R-CHOP. I have no symptoms. Not certain what to make of this. 

 

 

betterment
Posts: 3
Joined: Feb 2019

Op back.  The onc saw no evidence of more enlarged lympth nodes. 

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

(non professional opinion)  It seems most likely to me that you have had indolent FNHL long term without symptoms and it has transformed to DLBCL prior to being diagnosed. There is a wonderful person on here named Rocquie who had a similar situation. She has been very helpful to me so I would recommend you approach her. I am sure she will share some very helpful insights as to how she proceeded in her similar situation.  Best of luck.

po18guy
Posts: 988
Joined: Nov 2011

Given your situation, I think it best to consult with a hematologist rather than an oncologist. Unless they are one in a million, oncologists cannot be on top of the extremely complicated lymphoma world. If you are in the US, I would strongly suggest that you consult with a research hematologist at a major facility, such as an NCI designated comprehensive cancer center. It can make all the difference in outcome. 

betterment
Posts: 3
Joined: Feb 2019

Thanks!

po18guy
Posts: 988
Joined: Nov 2011

I had to learn it the hard way. An experienced local oncologist and pathologist completely missed the lymphoma when I first consulted with them. Doctor wanted to wait and see what developed. Well, there is no stage V lymphoma. Very fortunately, we had received the advice that saved my life from the surgeon who performed the biopsy. He told us, almost as an aside, "If you ever hear the word 'wait' from a doctor, run for your life. That is exactly what we heard, so we ran.

DW had already made an appointment at the treatment arm of Fred Hutchinson. I was providentially linked up with the hematologist who just the year before had decided to specialize in the rare lymphoma that I happened to have. Had any of those puzzle pieces been missing, I simply would not be here.

'

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

Hello Betterment, Welcome to the group! I'm sorry to hear that you have lymphoma, but please know it is very treatable. I'm so glad you were diagnosed before you began having symptoms. That is a very good thing.

Myself, I was very symptomatic (sick) when I was diagnosed by my family doctor. When she told me I had lymphoma, I asked, "what's that"? I had never heard of lymphoma. She referred me to a hematology oncologist and treatment began. I had 8 treatments of R-CHOP followed by 2 years of Rituxan maintenance. I have now been in remission for almost 6 years. 

There are several types of lymphoma as I'm sure you know. When you hear people talking about their experience, that doesn't mean it will be the same for you. If you are interested, you can click on my "about me" page and read more about my journey. I would also encourage you to fill in your "about me" page. It helps us all to know more about you. 

I will answer any questions you have. But I remember how overwhelming this can all be in the beginning, so I don't want to flood you with too much.

Hugs,

Rocquie

 

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