Need advice : urgently

Hey,

I too had 22cm Spleen at diagnosis and went back to normal after about 6weeks. I had some pain in that area as it returned to its normal size but it was felt in my back rather than the front. You will get odd aches and pains all over your body from time to time as your body adjusts. The only pain you need to worry about that in that similar area is pancreatis which can be caused by Nilotnib but it’s very rare like 1% and doubt very much it’s that.

I do also believe through anxiety we can bring on many real physical pains, certainly I’ve experienced this over the past 15months since diagnosis. The question you should ask yourself is did you feel pain when your spleen grew to it’s 22cm size before diagnosis I can answer that in my experience I had no pain at all so it doesn’t make sense that this pain is also caused by it growing back. Nilotinib works, I am not at MMR yet but I am close and hope it continues to go down and stay down. Give your body sometime to adjust and your mind to. It’s a very anxious time I get it. I for one still feel my spleen region everyday to reassure myself that it’s not back. I’ve yet to shake that habit, with not knowing what’s going on in your body it’s kind of the only main indicator physically that something is wrong, that and my weight loss which I’ve gained all back since being on treatment. The medication can cause spleen pain I’ve read several posts on here too.

Of course if you are concerned speak to your doctor who will also put your fears to rest.

All the best

Alex