HealingWell
Search Close Search
☰

Lymphoma Testing

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/20/2020 7:53 AM (GMT 0)
I’ve been on various biologics for the last two years and recently I’ve been experiencing some soreness in the lymph nodes in my neck and head. I mentioned it to my gi nurse today and she’s told me I need to go to my general practitioner to get tested for Lymphoma.

I’m freaking out just about the testing (I’m not even going to entertain the possibility it could be lymphoma yet), as google makes it sounds awful. I’ve read about lumber punctures etc and now I’m worried about what to expect when I see the dr this week.

Has anyone else gone through lymphoma testing and could let me know what to expect? I’m hoping for just blood tests, but guessing they wouldn’t be reliable considering all the drugs I’m on (Simponi and pred)? What was your experience with the tests? Did you need to see a specialist and how long did it all take before you got or your result?

Thanks
Posted 1/20/2020 4:42 PM (GMT 0)
I am sorry to hear you're having concerns with Lymphoma. When I was on 6mp, I was sent to a hematologist to get checked out and they wanted to do a bone marrow biopsy. I decided to stop the drugs and see if the symptoms improve and at the same time I kept monitoring my blood - things went back to normal in my case. Like you, I am not at all fond of crazy tests. My symptoms weren't lymph node involvement though, it was just abnormal blood counts and fatigue (which is quite normal for me). I don't know what you can expect so far as tests but I hope it's nothing terrible. Things seem to have gotten easier and less invasive in the medical system over the years. Step one is to go get the information. If you're not comfortable with the doctor, see someone else. You can go on multiple consults. We have had a few members who have had lymphoma due to UC meds. One was a moderator, Madcat. I am not sure if you remember him? If you look him up you can find some info. He beat it... I am sure it's nothing so do not stress.
Posted 1/21/2020 4:25 PM (GMT 0)
This is one of my worst fears. I'm so sorry. I hope the tests aren't too bad and that they come out with good results.
Posted 1/21/2020 7:37 PM (GMT 0)
Thanks for your replies both, I go to see my general practitioner today so should know more then. I’m guessing he will refer me to a specialist.
If they ask me to stop the meds I think I may be in trouble as I’m still not in remission. Will just have to wait and see and try not to worry.
Posted 2/11/2020 7:55 PM (GMT 0)
I have gotten peripheral neuropathy after UC. fast forward and based on small nerve fiber test that was positive, I end up with several sets of blood work. Ended up @ hematologist / oncologist and Dx of MGUS. No connection to UC, I'm told. But I believe otherwise. My IGG are out of whack. It's a blood disorder related to the immune system and could become a blood cancer.
Visit the best / head of department hematologist /oncologist you can find. Call office and tell them you want the best and one who will explain all the weird tests. Out of the dozens of results I've had, all but 2 are normal so it could be a red herring. The ones out of whack are spooky and need a specialist to properly explain them in context with all the other blood work.
Posted 2/14/2020 6:25 PM (GMT 0)
Ausruby, how did it go with your GP? I hope you have no signs of lymphoma and the tests weren't too bad. They should be able to do some blood tests and rule things out pretty quick.
✚ New Topic ✚ Reply