Remicade & lymphoma

my heart is breaking for you, girl. i cried when i read your post! i am so sorry this is happening to you. i hope that it isn't lymphoma. these medication side effects are terrifying. what are you doing for your flare right now in the hospital?? if remicade isn't working, i'd get off of it since lymphoma is a remi side effect.

I'm hoping your swollen lymph nodes are something else and not lymphoma. I would not assume you have it until you are diagnosed as it could be a false alarm.

The FDA posted about lymphoma cases and tnf-alpha blocking medications initially in 2008, had a followup in 2009, and a safety announcement in 2011. The excerpts below are from the initial 2008 fda posting. The 2011 version has a table by medication, age range, median, etc.

• On June 4th 2008, FDA issued an Early Communication about an ongoing safety review of TNF blockers and the development of lymphoma and other cancers in children and adolescents. The Early Communication was based on approximately 30 reports of cancer in children and adolescents treated with TNF blockers.
  
  The completed FDA analysis identified 48 cases of malignancies in children and adolescents. Of the 48 cases reviewed by FDA, approximately half were lymphomas, including Hodgkin’s and non-Hodgkin’s lymphoma. Other malignancies reported include leukemia, melanoma, and solid organ cancers. Malignancies such as leiomyosarcoma, hepatic malignancies, and renal cell carcinoma, which are rare in children, were also reported. Of the 48 cases of malignancy, there were 11 deaths. The causes of death included hepatosplenic T-cell lymphoma (9 cases) and T-cell lymphoma (1 case). In the remaining case, the patient died from sepsis after achieving remission of the lymphoma.
  
  
• FDA reviewed 147 post-marketing reports of leukemia in all patients, including adults, using TNF blockers. Of the 147 cases, acute myeloid leukemia (44 cases), chronic lymphocytic leukemia (31 cases), and chronic myeloid leukemia (23 cases) were the most frequently classified types of leukemia reported. Four pediatric cases of leukemia were reported in the review. Most patients (61%) were also receiving other immunosuppressive therapies. There were a total of 30 deaths reported. In 26 of the 30 deaths, the cause was reported to be leukemia, and the event was associated with the use of TNF blockers. The average time to onset of leukemia was within the first 1 to 2 years of therapy.
  

The following "Risk of Lymphoma in Inflammatory Bowel Disease" study goes through the results of some cases, including some meta analyses.

I am really sorry. I hope that it's not what you think. A few years ago, I had a lot of symptoms that seemed like they might be cancer and it ended up being side effects of neutropenia from 6mp. I am hoping you get the same type of news. I think the cancer associated with immune suppressants is called T-Cell Lymphoma. Please try to stay calm until you know what's going on.

Aww thanks y'all. Please don't cry though! It is scary but let's wait for a diagnosis and see where we go from there. The actual hard part is hiding all this from my mom. I don't want to say anything till I know for sure. Otherwise she's just gonna be a wreck and that's harder for me to watch than anything else.
For the flare, Solu Medrol is wonderful. IV steroids work fast & great, but I could not sleep! They did offer heavy duty pain meds, which I used Day 1, but really don't like how they make me feel. Now we wait.......agonizing, but I'll keep you updated.

Oh wow, I'm so sorry. That is so scary. I hope you get some good news and that it's not lymphoma. Please keep us updated!

I'd have your GI connect with an infectious disease expert too. We used one in so FL (Dr. Levine with the Baptist Health System) in Miami. My daughters lymph nodes were swollen seriously, the ER doc said Lymphoma, and Levine quickly ruled it out. It was Mono, but the first test called a Moni Spot was negative. He was just sure from the nature of the nodes( I forget if it was size coupled with ?). I hope for you it is an infection easily cleared. Keep us posted.

I said I'd keep you all updated so....HemOnc MD says it's looking like Hodgkin's lymphoma. I'll be having a laparoscopic excisional biopsy sometime next week (actual lymph tissue instead of just cells biopsied before) and then a PET scan for a hard diagnosis and staging. I'm pretty shocked. If you were to have any cancer though I suppose Hodgkin's is the one you want. It's slow growing and highly treatable with a low recurrence rate. Of course gonna get second opinions on everything, but the MD seems pretty confident in the diagnosis. Thank goodness outside of some weird pain I'm otherwise symptom free. I guess I just attributed little weight loss to UC.
I suppose we all know the risks of the meds we take, but it's just stunning to actually add this on to what I already thought was a challenge! I'm 36yo, and with chemo there's a real risk of infertility. Something else to think about...banking eggs seems weird to me. Not very romantic huh? So until I have a hard diagnosis I'm still not sharing with my mom, but two good friends and unfortunately my boss (who's been cool about it) knows. And of course you guys! I do not mean to scare or burden anyone with this. I just think this is a great place to share information, knowledge and experience. It may help someone out, and it certainly is helping me out right now by letting me unload a little.
There are studies tracking and trending side effects so I will certainly add this to the mix. Now of course will be the decision to stop Remicade, but then what? Can't stay on prednisone forever. It took me a really long time to wean off last time. Oddly enough chemo may put me into remission, if it's gets to that point. What a bummer!

Please don't be sorry about sharing this. I think there is a little too much acceptance of these biologics and too much of the mentality that the risks are really small and too many people talk about all of these biologics as if they were talking about eating candy. Yes, the risks are small, but they aren't small if it happens to you. I'm sorry it happened to you but we need to know that it does happen. Please keep in touch. We're all rooting for you to beat this and I have no doubt that you will.

Hello again!
Had laparoscopic biopsy yesterday. They removed the largest lymph node (above and to left of belly button). Waiting on those results. Have seen two oncologists (2nd opinion came from Moffitt in Tampa, FL). They are both confident it's Stage 3 Hodgkins but need pathology to sign off, hence the biopsy. I have an appointment with a new GI on Monday. Hopefully he will have post-chemo suggestions for the UC. I asked MD at Moffitt if she sees lymphoma patients with any IBDs and she said rarely. She's a lymphoma expert and said she's not sure what they do after Remicade is no longer an option. She does see plenty of rheumatoid arthritis patients on Remicaid, but I think their options are different from UC. So no new info, but I will continue to email MDs and hopefully find other options.
Also had a port installed for chemo, which should begin about 9/28. Still need bone marrow biopsy and a few baseline echoes and pulmonary function tests to monitor possible future chemo side effects. I'm ready to get started and get this over with!

It sounds like you're being really strong. May this all be over quickly for you.

I too would start giving surgery some serious consideration seeing as you've already been through so much.

I have a friend who had hodgkin's, i think it was stage 3, and she fared very well through the treatment. She's doing incredibly today - it's been a few years since she completed treatment. :)

I am so sorry. I was hoping it would be nothing.

So sorry to hear that UCh8r, but seeing how you are presumably reacting to this new inspires me to just keep on truckin with my UC and to learn to accept different challenges as they come. I can't imagine how you're feeling right now, but that is what I took away from your post. Hoping for the best possible outcome for you.