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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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@joeeduffy

My husband was just diagnosed with CLL and I am a nervous wreck. We were hoping his levels were just elevated due to smoking or perhaps the COVID vaccination (that many people say happens), but it was not.

He is getting more blood work today and is waiting on another CT scan to see how far along it is. His hemotologist seems to think it is at level zero. He is going to be 55 in a couple of weeks and we are just devasted.

Our lives have always been good but over the past few years they have been great! But, now we have the worry of this and how to pay as even though he has a good job, our medical plan (like many others) is terrible, we have debt and all he can think about is me being alone and us losing everything and our home in the future.

You see this happen all the time and once you hear the work 'leukemia' or 'cancer' your life is forever changed.

Thankfully, he has stopped smoking (well, with Chantix) and was down to only 2 cigarettes a day a week ago and now he hasn't smoked for days. And, I just pray that it stays this way.

I am worried about traveling, flying, being in large crowds due to being more susceptible to infection.

I have looked tirelessly (we found out less than 24 hours ago) for support groups for him, me, us whatever in our area and have come up empty handed.

The Dr. had the video results and called before our appointment so he found out alone and didn't ask any questions. So I am just feeling so defeated and need to be stronger and I feel like I am failing already 🙁

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Replies to "My husband was just diagnosed with CLL and I am a nervous wreck. We were hoping..."

Good morning, @joeeduffy and welcome to Connect. I think you’ve found the support group for your husband
and you! Most of us in the blood cancer & disorder group have had our own personal experiences or are supporting family members with an illness and we’re here to offer encouragement and hope.

Your husband has been diagnosed with Chronic Lymphocytic Leukemia (CLL) Fortunately, this is usually a very slowly developing form of leukemia. Your husband may not even need treatment for many years depending on the stage of his disease. When needed, there are treatments which can help slow the progression, giving many patients a long and healthy life.

I firmly believe that knowledge is power. You gain control over this diagnosis when it’s no longer a mystery. Here are several articles that discuss CLL and treatments when needed:
and https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732
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https://www.verywellhealth.com/chronic-lymphocytic-leukemia-causes-5210846
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https://www.healthline.com/health/chronic-lymphocytic-leukemia-cll
There are a number of fellow members who also have CLL with several discussions within the group:
Here is one of those discussions:

CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
You’ll meet @kegraves @justinesmith @5gk @rlybolt and other members with CLL.

Many more can be found by typing in CLL or Chronic Lymphocytic Leukemia in the search bar. Don’t hesitate to jump into any conversation.

I know you’re worried how life will change for you and your husband with infection risk. With a blood cancer your husband’s immune system might not be as robust so it’s important to avoid illness. It might be advisable to wear masks in public settings such as crowed stores, church, elevators, etc. Use hand sanitizer after pumping gas, using door handles
that type of thing. Travel is fine, just wear an N-95 or KN-95 mask on planes and take some sanitizing wipes along to wipe down seat belts, trays, switches, armrests so that you are in control of your environment. I had an aggressive form of leukemia requiring a stem cell transplant, but I am cancer free now. However, I still use all the safety protocol when out in public. Even in our home family, friends and workmen are asked to mask up. It’s second nature now.

There’s so much hitting you and your husband right now. It just clips you off at the knees! But you’re going to find out as you get into this that your lives will fall into a routine and you’re both going to be able to exhale again.
It will be helpful to sit down and talk with your husband’s doctor. Does your husband have a followup appointment?

Good morning @joeeduffy.joeeduffy
My best friend just learned her husband has leukemia as well. The emotional reactions to such news are totally devastating and destabilizing. I want to reiterate the importance of what others have said, that this should be treatable and you both should be equipped with information about his type of leukemia. It’s called chronic because many people live with it for many years and live well. I would also caution you against trying to change too many things out of desperation. It’s not necessary and just adds more stress in your lives. Quitting smoking and getting the sleep apnea treated adequately are 2 important steps, but extreme diet changes are probably not necessary. Gradual steps toward a healthier diet over time are fine.
My friend is going through the same stages of shock. I wrote a poem that expresses the initial reaction to such scary news that can be found on
https://allpoetry.com. Just put in search for Slkanowitz, click on my name and scroll down to poem titled Hard Copy. It only describes the initial reaction but there’s so much hope going forward for you both. Surround yourself with positive thoughts, people and loving support.