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New to these boards. DLBCL diagnosed 11 months ago

Mankyle

Member
Some updates

I got my 2nd year PET and nothing in neck, armpits or thorax. The elevated uptake areas in my abdomen (mesentheric panniculitis, basically inflammed fatty tissue around my guts) have reduced significantly since the one year PET.

Nothing remarkable except three inflammed nodes in my right inguinal area. One with 1.1 cms and 2.7 SUV and two smaller ones with 3.4 SUV...

I have intermitently suffered epididimitis in my right testicle during the last 5 years or so and the doctors think it could be related. The only thing I have is some slight discomfort in the area (no pain) and the doctors say it is (probably) nothing but the nodes are too small to try to biopsy them so they have recommended "watch and wait"..

It is probably NOTHING but with these things one can never be sure...
 

Sue B

Active member
I am assuming that you had high SUV's on your PET scans in the past given that you were diagnosed with Grade 3b. Most likely these low level SUV readings are due to inflammation. I know that most of us here on the Forum often jump to negative conclusions anytime a lab or result is not perfect. I for one am guilty of this thinking even 9 years out from my SCT. Only advice I can give you is to just keep an eye on things, assume the best and try to enjoy each day.
 

FB43

New member
There is no evidence of diffuse lymphadenopathy. It’s very encouraging that your neck/ chest/ abdomen images are essentially negative.

As I recall, you have had occasional palpable lymph nodes due to reactive changes.
The inguinal lymph nodes on the right are likely due to inflammation secondary to the inflammation that you mentioned.

I agree w Sue. Please focus on the good news and try not to focus on the “what if”.
It sounds like you have excellent care and co to us to take care of yourself.

FB
 

andym

Super Moderator
That does sound like good news, even if it isn’t simply a clean scan. Hope you can relax and enjoy it (and not have too much discomfort).


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Mankyle

Member
Some update

Next week on Friday I will get a PET. As I had some uptake in the right groin area when I got the last PET in June the doctor said to repeat it in six months...

Last week I had a cold and yesterday I detected one lentil sized node in the right cervical area. I'm still eliminating mucus and sneezing so I hope this is another false alarm...

I know I'm suffering "scanxiety" but I won't probably be able to feel safe until I get my PET results on January 13th...

I wish all of you merry chistmas and happy NED year!
 

andym

Super Moderator
Sorry that you have to deal with scanxiety over the holidays. With DLBCL, I'm thinking that it is good news that you have gone 6 months with an inguinal node and it hasn't made itself obvious. At the very least, you know that it hasn't been growing fast. And a cold can certainly explain a cervical node getting a bit bigger. So, I'm hopeful that you will be quite relieved in a couple of weeks. But I also understand that waiting is hard and worrying is normal. So I will be waiting and hoping with you.
 

zac495

Moderator
It's always anxiety producing - so normal. Here's to a clean PET which sounds likely. We're here waiting for your news!
Love,
Ellen
 

Mankyle

Member
Well....

Just got out of the hospital from having my (more or less) 3rd year PET-CT...
On Monday I have the appointment with the haematologist...wish me luck
 

Mankyle

Member
Got my blood tests and PET-CT results today...

Still NED and the mesenteric panniculitis has improved.

More blood tests in 3 months and another PET in one year...

Best news I could have
 

fighterm

Member
I don't know. That study was done in 2013 with only "220 consecutive DLBCL patients"....not sure what the consecutive means. If blood tests were not an indicator of potential relapse, it would be hard to understand why so many top cancer hospitals use them with their patients post treatment.

Congratulations on your diagnosis of NED.
My doctor does not want to start my treatments unless I have symptoms. I have 2 remaining tumors after my treatment in July, but no symptoms, and she does not want more scans so I do blood tests only. One tumor is 6 cm in the pleural space, when it grows I cannot breath. And my blood oxygen goes under 90. So we know when it grows. My blood tests were always good even when the tumor in the pleural was 15 cm. I also don't know why doctors want to see blood tests. One idea comes to mind is maybe the bone marrow involvement.
 

fighterm

Member
Got my blood tests and PET-CT results today...

Still NED and the mesenteric panniculitis has improved.

More blood tests in 3 months and another PET in one year...

Best news I could have
After my treatment in 1992 I was NED for 15 years, dlbcl was cured, but FL came back.
 

Mankyle

Member
The later it comes back, the better...

As my onc told me yesterday... in 15 years lymphoma will be no more serious than a cold given the advances we are seeing in immunotherapies

For the moment... happy
 

earthling

New member
The later it comes back, the better...

As my onc told me yesterday... in 15 years lymphoma will be no more serious than a cold given the advances we are seeing in immunotherapies

For the moment... happy
I love it when I have to stay away from the forum for a while and find awesome news as soon as I return :) Yay! Congrats Mankyle!
 
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