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I just discovered I have leukemia

Blood Cancers & Disorders | Last Active: Apr 24 10:40am | Replies (38)

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@loribmt

Good morning, @joeeduffy, I promise you’re not alone here! This forum has been a lifeline to so many of us. It really helps to be able to talk to people who have gone through similar experiences. I always picture this group as sitting around the kitchen table like my mom, grammy and aunties used to do when I was younger. They’d sort through ‘the dirty’ laundry of life and solve the world’s problems. LOL. Anyway, my hope is that you feel like you’ve gained a new family. ☺️

Since we’re sitting at that kitchen table right now, I’m going to offer you some hope and encouragement about your husband’s diagnosis of CLL. I know anytime we hear leukemia or cancer it’s an automatic ‘shock wave’ going through the brain and we typically fear the worst.

CLL is usually very slow to develop and progress. Anecdotal comments from hematologists and also people I know who have CLL, this is something you ‘die with, not from’. If it’s any comfort at all, I had ‘the worst’ of leukemias with a poor prognosis, and yet here I am, sitting at the kitchen table with you 5 years later…perfectly healthy. These treatments can work! So please try not to fear the worst because those ‘what ifs’ just cause unnecessary stress and become a thief of time.

Your husband is making some drastic and positive changes in his lifestyle by giving up smoking! Kudos to him! That’s huge. I’m not sure he needs to give up caffeine though, is this something his doctor suggested? A little caffeine daily with coffee or tea aren’t harmful. If it’s coming from colas & sodas, that’s another story. He’ll want to cut down on excess sugars and the negative side effects of those products.
It’s not easy changing diets in the household but a good, healthy diet plan such as the Mediterranean Diet would be a great place for you two to make the switch. The foods are delicious, simple, with healthy fats. They’re also high in antioxidants which can help reduce inflammation in the body.

There are a number of discussions in the forum for people who have Sleep Apnea, needing BiPap machines. Maybe there will be some pointers in how to get your husband started with wearing his. There are many more conversations you can find by typing in Sleep apnea or BiPap or Cpap machines in the search window at the top of the page.
Here are a couple links to get you started:

https://connect.mayoclinic.org/discussion/sleep-apnea-29d741//
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https://connect.mayoclinic.org/discussion/cpap-machine-for-travel/

Was your husband having symptoms that led to his diagnosis?

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Replies to "Good morning, @joeeduffy, I promise you’re not alone here! This forum has been a lifeline to..."

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.