The title pretty much sums it up and I'd be lying if I said I wasn't scared. I'm a pretty cool customer and when I hear hoofbeats I look for horses not zebras.
I went for my Actemra infusion yesterday and had the normal blood draw which is full metabolic, CBC and ESR with liver panels. My liver numbers have been elevated for quite some time. Not before now did they cause anyone any major concern but what is really concerning is my white blood count. I haven't been able to log into the portal to see the rest of my labs but my doctor called me very concerned. I've been on antibiotics for five days, four before the blood draw. All this is frightening for two reasons. One, I hope and pray I do not have leukemia again. I am brushing but we've been chalking that up to the prednisone. Over all I feel good, practically great even despite having a pretty wicked bout of pleurisy over the weekend. I am frightened no doubt. I barely, and I mean barely survived the last of two bone marrow transplants. A third is out of the question. Secondly, if all is good on that front I do not want to have to go off of Actemra. It's the only thing that has worked for me in 14 years. My rheumatologist wants to do labs again in two weeks. I'm not so sure I want to wait that long and I'm thinking of calling my GP to get in to his office and have him draw them.
And thoughts, wisdom or distractions are all appreciated -
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Nitrobunny
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Oh wow that is worrying. I would go to GP for peace of mind if he has been your Dr for a while and been on the leukaemia journies with you. It may be that the pleurisy sent your WBC soaring. Hoping it is good news for you. My liver levels have been so high since bad reaction to antibiotics so most peoples scary levels are my Oh that's not so bad hahahah
Morning sorry you're on the treadmill again, pick up the phone and check with GP , this way you can put your mind at rest, Fear is only as deep as the mind allows.
finger crossed for a good result, lots of hugs and warm touchy stuff. Craig
So sorry you are going through this. I don't have any helpful advice to give, but I want you to know I care.
If you have another blood test very soon, and it's the same, what extra information will you have? Just that the first was not an error.
If you have another test in a week or two weeks and the levels have returned to your normal, that would suggest infection has raised the WBC count. If the levels are rising, that would suggest leukaemia.
So the maximum information will be gained by having another test after an interval.
That's difficult for you and I wish I could hold your hand (gently) while you wait.
Uck what a worry for you. I think Oldtimer is right, another blood test close to the last one may throw up the same worrying results for you. Would it help going in for a chat with your GP? sometimes face to face is more reassuring and it would give you an opportunity to discuss it fully.
I really really hope your worst fears are groundless and it is all down to the prednisolone.
Thank you one and all for your kind words. I had decided to wait until next week to repeat the lab after thinking on it for a while. The fact that I had been very sick over the weekend and the prednisone, Actemra etc. Aside from a little fatigue I actually feel quite good at the moment. Usually I know I'm out of remission (I've been in and out eight times since 1997, most recently in 2014 for a brief time) because I experience many of the same things I do now but, I get a deep bone ache, and I feel like I can't pick myself up off the floor. My rheumatologist, while being absolutely amazing and just the kindest doctor I've ever had, is new to me as of this summer and hasn't been through an ALL round with me. So while it looks bad, I'm going to go by experience and how I feel before I go to general quarters again. I spoke with him this morning and explained my logic. He said that he was going to accept my thoughts on it and look again at my cancer history. My WBC is 22.7 thousand (they've been on the rise over the past 6 months but this was the most dramatic and sudden by far) while my red is still hanging out at 3.69 which isn't too far out of line My Neutrophils are also extremely high at 20.2 Lymphocytes are at the very edge of low normal with Monocytes are high at 1.4 My platelets are on the move down steadily at 141. Not very pretty at all but again, I imagine everyone of us has an aspect about our labs that would be shocking for a "normal" (I hate that word) person
After speaking with my oncologist who says while he is a little nervous, he is cautiously optimistic at this time after seeing the labs, and that they are a cause for concern however, there are so many autoimmune disorders that test present the same way in labs and there are many leukemias that test similarly. It warrants close study but just because they look bad, it doesn't mean something nefarious. In my case I've had/have both so it makes things a little tricky. Back to my horses not zebras statement.
The best news of all is my ESR is 1 for the second month in a row after being incredibly high for years even with the prednisone. Take that inflammation!!!
Hi. I'm new here and your post stood out to me.. I too have a history of ALL and understand your concern and fear. Please talk to your doctor asap so you can get your mind put at rest. I'm a 26 year old ALL survivor so if you would like to talk PM me. Xx
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