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Got the Remicade start-up kit

It came via courier today. The kit is basically a concise package that includes a CD, symptom tracker, reminder stickers, and a booklet covering information and questions and answers.
It was very informative. The front cover has a young boy and a young girl running in a field laughing.
It all seems to make you feel very good about the decision to opt for Remicade. Until I got to the back cover, and small print. That's where all the negatives are about T-cell lymphoma, lupus, and various other problems with bacterias like listeria. Particularly when taken with Imuran, which my Daughter will be.
What a stark contrast to the look of the whole package.
Does anyone have a real fear about Remicade and Cancer? Do most feel it's an extremely remote possibility?
I suppose that's all we can do. I know that warning labels are scary and exist on the simplest medications. Never know just how serious to take the threat.
I had a half an hour conversation with the pharmacistbatbthe specialty pharmacy in Toronto 2 days before my first infusion as well. She talks through all the risks and dos and don'ts to protect yourself.
I have a real fear about it. That's why we haven't quite made the leap yet. I have a teen boy and apparently teen boys are at a higher risk, especially on a 6MP/Remi combo. And I think as a parent, it's an even harder decision because if cancer does enter the picture, really, you're the one who made the initial decision on you child's behalf. Then again, untreated or under treated IBD has its risks as well.

Good luck with the Remicade. I truly hope it helps your daughter.

That's so well put. Not only do we have to worry about the long term possible negative effects of these drugs, then we would have to cope with being responsible, if something goes dreadfully wrong.
The one thing that's makes the decision a little easier is, the disease can do irrepairable harm. I think in hindsight if we had of gone to Remicade sooner, my Daughter wouldn't have likely suffered the permanant damage she has now.
There's of course no guarantees. We just hope and pray that it's the right thing to do.
Good luck with your son as well, and thanks for replying.


Staff member
This has been a constant fear of mine as well. :( I try to remind myself that we all choose 'acceptable risks' to allow us to have the quality of life we desire (as parents, we do it for our children).

For example, my son played hockey - I lived in fear of the hits from behind, etc., my daughter did horseback jumping - a few more years shaved off my life!, then came their drivers' licenses at 16/17 - ugghh... still dealing with this one!, then there are the sunburns from a day at the beach no matter how suncreen vigilant we try to be, etc., etc. But, keeping ourselves/kids absolutely risk free would have lowered QOL. I've also said that we weren't asked to sign a waiver listing all the risks everytime we let our kids out the door... (or we MAY have kept them locked up! - forget the QOL! :lol:)

We do what we have to do... I hate that Stephen is on remicade and I know, should anything happen, I will feel some responsibility but... :(