Wbc/rbc count with 6mp

[Lindseyw4]

I finally got access to Cameron's labs and of course am now driving myself mad with worry. I noticed that his lymphocytes and neutrophils percentages were way off the charts, with neuts in the higher than average range and lymphs in the lower. Because he's on 6mp (which is why the labs were drawn in the first place) I'm now afraid this means he's developing cancer. The doctor of course has not been worried about anything but I've lost trust in him. I also noticed tonight that i n november they told me his inflammatory markers were "a little elevated" when the labs show that his c-reactive protein level was twice as high as it was prior to dx and 3 times higher than the normal range.

I'm strongly considering having him change his meds because although the risk of getting t-cell lymphoma is low low, i haven't found more specific studies, i.e. incidence of people in my son's demographic getting it. Who are the people who do get it? I didn't realize when we first began the med. that the kind of cancer associated with 6mp is actually very fatal.

On top of that I'm afraid that me thinking about it or grieving it's truly a possibility is now ggoing to make it come true. I know that sounds silly. i hope he will be ok. I'm pretty positive he'll be ok. But i can't go on with a medication that has a fatal risk. While it's more likely we'd get in a car accident on the way to clinic than getting cancer, accidents are more survivable. And like i said they haven't really identified risk factors for people taking it.

 

[my little penguin]

Actually car accidents are the number one cause of death of kids under 14

Risk is 1 in 250
Drowning second 1 in 1000

T cell lymphoma is when you are on or have been on an immunosuppresant such as 6-mp or mtX AND ( I do stress and ) -a biologic such as remicAde or Humira -risk there
6 in 10000

As far as labs if you don't trust your GI call for a second opinion in the am
It's not hard
Most good GI welcome it
And can been done quickly
We have gone to the one of top Ibd centers twice just to make sure .

Remember to breathe
And not all papers are true for every paper that says x I can find two that say y
Just the nature of research

Good luck

 

[Lindseyw4]

It's quick to get a second opinion? Can you really just call and get one over the phone? I have an appointment scheduled with another peds GI at a different clinic next month for a second opinion. I didn't think doctors within the same group would undermine their colleague.

And i believe I've read those statistics on here before (maybe even from you?). Nice if you can find peace knowing you'll die in a car accident before you die from the meds but what are the factors in accidents? Seating location, speed, use of restraints, etc. Things you have control over to help prevent. What's preventing the risks of the meds from occurring? How much suffering occurs due to med complications? As you said you can find 2 Ys for every x

 

[Chester31]

My son's lymphocyte count dropped after just a few weeks on azathioprine. The doctors weren't too concerned as it's the total white blood cell count and neutrophils that they are particularly interested in. As it continued to drop he was taken of Aza and put on 6mp. Unfortunately his total WBC has dropped after a couple of weeks on 6mp so we are now looking at Humira or Infliximab. Six months ago the thought of my son having to take one of these drugs absolutely terrified me but now so does the thought of uncontrolled Crohn's. A second opinion is a good idea - we didn't see another GI but an immunologist did have a look at his results. Good luck.

 

[DustyKat]

*Hugs* to you. :ghug:

It is so hard not to think the worst when you read of the serious side effects of these meds. This is your child and the most precious thing in the world to you so how can you not freak out. Add to that the fact that you are helpless to take this disease away from your son and it becomes overwhelming.

I have two children with this disease and I would be lying if I said it doesn’t worry me but over time I have had to overcome it lest it consume me and render me a useless mess. In some ways I think I was given an advantage in pushing the worry into the background as my daughter went undiagnosed for a long period only receiving a diagnosis on the operating table. I saw what untreated Crohn’s was capable of and what it showed me was my daughter coming within a whiskers breadth of losing her life. As a result I grabbed onto the meds with both hands without a thought. As time went on and dust settled I learnt of the risks and yes, it freaked me out but I was between the devil and the deep blue sea. I can’t stop the worst of the side effects happening but I can make sure we keep on top of most things with vigilance and monitoring and in doing so I do have a level control. I can’t go back to those dark days of 8 years ago, the level of fear, frustration and hopelessness of seeing my daughter fading before my eyes has for me made medication as the lesser of two evils.

It is paramount as you start this journey with your son that you have faith and respect in the doctor and team that is treating your son. Without it you will be forever second guessing every current and future treatment plan.

The blood results do not mean your son is contracting cancer hun. :ghug: Lymphocytes are the cells that 6MP target to reduce the effects of the immune system so a drop below normal is not uncommon, what is important is how far below they do go. What is also important is that monitoring is not only done for liver function and blood counts but also for Thiopurine Metabolites.
The greater concern for Neutrophils is a lower rather than higher count. Generally an increased count points to infection, did your son have a cold or anything like that when bloods were drawn?

It can be hard to put things into perspective when looking at blood results as perspective often only comes with time. Blood results can vary from draw to draw and it is not uncommon for one off glitches to occur. What for all intents and purposes to us are abnormal results are in the eyes of doctors, that see far worse results day in and day out, okay. in the realm of IBD we sometimes have to expand the normal reference range of results and work within those. Take faecal calprotectin for example. A normal paediatric number is <166 but for IBD many GI’s are not adverse to raising that to 300. I do it myself. Our lab has a normal CRP as <6 (this is in Australia so our values are x10 US). If my son’s CRP returns as twice normal (12) I shrug it off because at his worst his reading was 352. This then leads into the next thing you need to do with test results and that is to track trends as this will not only arm you with knowledge about your son’s disease and how it affects these results but it gives you the all important perspective.

As to how much suffering occurs due to med complications? Well I can’t speak for anyone else but in our case my two have had no issues with 6MP’s parent drug Imuran and they have been on it for 8.5 and 4 years respectively.

Thinking of you. :heart:

Dusty. xxx