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Diagnosed with Diffused large B cell lymphoma

Mainuh's picture
Mainuh
Posts: 3
Joined: May 2019

I'm a 58 year old male just diagnosed. Three months ago I was minding my own business and went to my PCP for a regular checkup.he noticed something weird about my heart and pulse and ordered an echocardiogram. They found a dilated ascending aorta and a regurgitant aortic valve. CT scan subsequently confirmed this. After consulting with a thoracic surgeon, it as agreed to proceed with surgery to correct both of these conditions With a scheduled surgery date of May 6.

During the PreOp physical for surgery, they noticed a lump in my neck. They did a CT scan of the neck and findings were , "highly concerning for metastatic lymphoma ". A subsequent biopsy resulted in a diagnoses of large B cell lymphoma. i met with oncologist last friday and they are now continuing to further evaluate the biopsy material to determine exact type and treatment options. I also have a pet scan tomorrow.

i will meet with the oncologist again on May 20. My pending heart surgery has been postponed as this takes precedence. I'm sure I will be starting Chemotherapy almost right away based on what they have told me so far. If you looked at me you would still never know I am sick. This whole thing feels very surreal and it hasn't completely sunk in. It's hard to believe. This is a club I never wanted to join. I'm a live in the moment kind of guy and a positive person but I have moments when I feel very scared. I do have a very good family support group and my wife will be there for me 100%. I'm kind of rambling but I need to start talking about this and I'm sure that I can get some inspiration from those that have gone down this road before me.

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

thats a lot to deal with at one time. I am no doctor but based on others I know, DLBCL can be cured. The fact you are in remission is a wonderfully positive sign. You are right to put the surgery on hold. Deal with that when you are feeling better. Best of luck my friend. Hang tough! One day at a time.

Scubamom for two's picture
Scubamom for two
Posts: 16
Joined: Apr 2018

Dear Mainuh,

I am sorry you have joined this "club."  I am a 55 yr old female who has officially been in remission for about 15 months.  I also had DLBCL and if treated soon enough and with the best combination of chemotherapy and Rituximab, there is a very high survival rate.  I am not a doctor, but I have learned a lot through-out this process.  Although each of us may have our own unique experiences, with DLBCL it is very important to get the proper additional testing done to determine the pathology beyond just narrowing it down to DLBCL to get the best treatment possible.  The best initial advice I received on one of these sites was to get a second or independent diagnostic and treatment plan opinion from one of the 70 National Cancer Institute  (NCI-Designated) cancer treatment centers.   DLBCL is a very aggressive sub-type of Non-Hodgkin's Lymphoma and not something to mess around with when deciding upon a treatment plan.  My local "experts" where I live actually did not quite get my diagnosis correct and they did not offer the comprehensive and aggressive treatment plan that I was able to get at MD Anderson in Houston.  Anyway, I would highly recommend that you contact one of the NCI-Designated facilities and at least have them review all of your test results or better yet if you can manage it, I would make an appointment at one and get their expert opinion, especially since you have some other medical complications. Best of luck to you on this journey and please feel free to ask questions and update us as you move along this path.  Stay Strong!

Mainuh's picture
Mainuh
Posts: 3
Joined: May 2019

I saw my oncologist again today. They have the rest of my biopsy work done and the results of the pet scan. Turns out I am at stage 1, so that felt good to know it is localized. I start chemotherapy on 5/29 (R_CHOP). I will have 3 sessions of chemotherapy followed by radiation treatment for about one month.

Mainuh's picture
Mainuh
Posts: 3
Joined: May 2019

sorry, double post.

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

congratulations.

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