Lymphoma Risk Diagram

[Chuck2008]

Trying to visualize the odds of getting lymphoma from taking 6-MP or azathioprine, I've created a graphic with 5,200 squares and 2 red dots. One red dot is the chance that anyone in the general population has of getting lymphoma in a given year. The second red dot represents the increased risk when taking an immunomodulating drug (6-MP, azathioprine and potentially methotrexate). Taking an anti-TNF drug? Add another dot, but only if you're also taking an immunomodulator. Facts from Risk of Lymphoma in Inflammatory Bowel Disease by Dr. Corel A Siegal. I've already decided to take 6-MP but was hoping the graphic would reassure me. But I'm not sure what to think.

 

[mwb3779]

That's pretty good odds....

 

[imisspopcorn]

Chuck, see what your risk of dying from a perforated bowel/ ruptured appendix is?? I really have no idea what the odds are for that. That is what I was facing and it scared me worse than lymphoma. It also depends on how miserable you are feeling...There are so many things to consider
....Many people fear being attacked by a shark, yet statistically you are more likely to be attacked by a cow....

 

[shazamataz]

attacked by a cow? LOL

I'd say that the risks likely outweigh those odds, simply because if the drug makes you feel good NOW then you can worry about later, later. No point in feeling miserable anf living longer but being really sick all the time!

 

[Chuck2008]

Hi,

As I mentioned I already decided to take 6MP so creating the diagram was more out of curiosity to try and visualize the numbers. I agree there is a bigger risk doing nothing and having risky surgery. Unfortunately I made a mistake in the diagram which I have now fixed, there should only have been 5200 squares instead of 10,000. Basically the risks are double what I was showing.. my bad

... I should also add that it depends on dosage too. And there is no 100% conclusive proof yet that immunosuppressants cause lymphoma since the studies don't have enough patient data.

 

[katiesue1506]

I don't think you can do it that way. The first statement (for the general population) is an unconditional statement. The second is conditional on whether or not you are on these drugs. They are two separate populations (one of normal people, and one of people on the drugs) they aren't the same population. I mean your diagram won't change, but you can't really put the two on the same graph because it indicates that you are looking into the same population.

Say you make normal people white squares and people on the drug green squares. Okay, those affected are red. In a general population diagram you would have white, green, and red squares because some of the general pop would happen to be on the drug too. In the only drug users population it would only have green and red squares.

Am I making sense here?

 

[Chuck2008]

Hi, What your saying does make sense.. I'm the first to admit the diagram is unscientific. I guess what I should have done just show all the squares and a dot and say "Here is what 1 in 5300 odds looks like if you have trouble visualizing it"..

To me, it doesn't look like a lot of squares

 

[imisspopcorn]

Try not fret Chuck.....I don't want you to get lymphoma any more than you do....Once you are on it, I hope you feel 10 times better with your crohn's symptoms. You will be monitored closely....

 

[Peaches]

Hi, What your saying does make sense.. I'm the first to admit the diagram is unscientific. I guess what I should have done just show all the squares and a dot and say "Here is what 1 in 5300 odds looks like if you have trouble visualizing it"..

To me, it doesn't look like a lot of squares

Ehh, you did fine! That is pretty much how Siegel presented it at the IBD conference, but what you said at the end there. He did use 10,000 squares and the 4 versus 6 result though - which for me seemed like NOT very much of a risk vs. benefit. And that was how he was presenting it as well - risk vs. benefit. Like Pop says - it can be an emotional hurdle to actually decide to get ON it - but if it works well for you - you realize what you've been missing out on - LIFE. Better to live a shorter LIFE than a longer, crappy life IMO. And those numbers - they are for people who GET lymphoma - the number for people who actually die from it is even smaller......

 

[katiesue1506]

I try not to worry about it either, I'm on 150 mg of Imuran, Humira, and Prednisone. I'm at way higher risk level. I just think about the probability that those things can be fixed is higher... hopefully

 

[My Butt Hurts]

Not sure, but I am thinking that since lymphoma is in the back of our minds when we take these drugs, maybe somehow we would notice the symptoms earlier than a random person who gets it? So many people just write off symptoms instead of going to the doctor, by the time it gets bad enough, it's too late. If we had unusual symptoms, we might get ourselves there sooner.

Also - someone mentioned dosage differences. I would assume that the amount of time on the drug would make a difference too. I was on Imuran for 1 year with Remicade, and now on Remi alone for as long as it works, I guess. I wonder how much that ups my chances.

 

[kenny]

Since I recently started taking Imuran(azathioprine) I have looked into this more. I want to quote Dr.H.Steinhart from her book Crohn's & Colitis, Understanding and Managing IBD.

. . . . the risk to any given individual taking these medications is extremely small. It has been calculated that azathioprine would need to be taken more than 4300 years for someone between the ages of 20 and 29 before observing one extra case of lymphoma. The risk of other cancers is not different in people taking azathioprine or 6-mp than in individuals not taking one of these drugs.

 

[shiningtears26]

wait wheres the chart

wait wheres the chart