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I just discovered I have leukemia
Blood Cancers & Disorders | Last Active: Apr 24 10:40am | Replies (38)Comment receiving replies
Not particularly.
He has very slightly higher white blood cell count a year or two ago but his general practicioner (who I am not very happy with ever) said that it could be due to the COVID vaccination but it wasn't a worrisome number.
Other than that it was just found in a routine physicals blood work. The part that stinks about that was he had it done in November and got the results and they told him it was elevated more and they were referring him to a hemotologist at the Brock Cancer Center in Norfolk, VA (we live in Virginia Beach). But, no one ever followed up with us and his follow up appointment was not until January 9th to go over his results and the hemotologist appointment was a couple of days later. It was rather frustrating as we had no one explain 'why' we were being referred or anything so we were on egg shells for three months not knowing what to expect and were told that if we were scheduled that 'far out' it wasn't a worrisome situation but precautionary. And, here we are.
He has had issues with swollen lymph nodes on and off for most of his life.
Replies to "Not particularly. He has very slightly higher white blood cell count a year or two ago..."
I understand the frustration. I have had the diagnosis for almost a year. It took weeks to get in to see the hematologist. My first appointment with him did not instill me with confidence and I began my online search for information and support. The folks here have helped immensely and I encourage you both to visit often. As far as the docs are concerned, your insurance company might be able to help you find one or two you feel more comfortable seeing. Call them or if possible, go in and talk to them. They do listen. Patience is the most we can practice in the initial stages of the diagnosis, give the medicos time to figure out the what and then decide the treatment, if any. Do the blood tests, ask about vitamins, minerals and diet changes they recommend. I have seen my hematologist twice since the diagnosis. He is a 300 mile one way drive away and we have agreed to do telephone appointments in the future. He tells me people my age (74) live for years with CLL and need no treatment. So knowing what type of leukemia is important and apparently it takes time to figure out the type.
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In a ‘little’ defense of your husband’s GP, it is possible to have elevated white blood counts after any vaccination. It is part of the body’s immune response. But I can understand if you’re not ‘feelin’ it with this GP. Sometimes we need to make a switch until we find the right fit.
The important thing now is that you and your husband feel comfortable with his hematologist/oncologist. This will be the person who will keep an eye on your husband’s CLL. Usually that just requires routine blood work every 6 months or so. It might be done more frequently initially until there is a baseline of results. Doctors focus on trends, not just a single set of results. If there aren’t any changes, then the leash gets a little longer between blood tests.
I know there is a lot of uncertainty felt right now. I think you’ll feel much better and less overwhelmed when you learn more at your husband’s consult appointment the end of the month. Wishing him good news with his upcoming CT scan on the 13th. ☺️