I just discovered I have leukemia

Good morning, @adeleke212. I’m filled with sadness for you and your family. It is very difficult when you learn that you have an illness which may end your life. You are faced with a range of emotions that most people can’t imagine. I have experienced this myself and found the most important thing was to open up and talk to your family and friends. It’s your time to make wishes known. Share stories and memories with friends and loved ones. Allow your family to help you with decisions so that you don’t feel so alone.

I realize cancer care is extremely limited in Nigeria and health insurance all but non-existent. However, it is important to talk with a doctor about how your cancer journey will proceed. Will there be a hospital if you need it? Do you have family who can be with you for support?

I’d like to learn more about you and your life. Would you like to share a little more about yourself with me? Do you have a large family? Children? What types of activities do you enjoy doing daily?

I’m a family of 6 my parents are poor so there is no how i can get my self treatment with this leukemia and i read it online that some hospital in abroad like Mayo Clinic treat leukemia but my family and i don’t have the financial ability to come to Mayo Clinic from Nigeria

There is a school of medicine in Nigeria that you might be able to contact: University of Lagos College of Medicine. I know about this as I have a doctor who studied there,

Okay thank your, do you have the doctor details and to be sincere with you i can’t afford the money for the treatment whatsoever the doctor call the amount but i can afford the transport from lbadan to Lagos

No information as my doctor graduated from there years ago. I am sorry but you will have to contact the med school yourself. Maybe there would be info on its website.

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 🙁

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
~~
https://www.verywellhealth.com/chronic-lymphocytic-leukemia-causes-5210846
~~
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?

Thank you so much. It is all very overwhelming and unexpected and I thank you so much for really reaching out to me. So often, there are places that they say that you can go for help and talk and it falls so short. So short meaning you are sitting alone and no one ever responds.

My husband does not want anyone to know anything as of yet because we don't know 'much'. In answer to your question, he just got the (additional) bloodwork and bone marrow tests completed yesterday (2/1), his CT scan is set for 2/13 and his follow up appointment is on 2/29.

In the meanwhile, we are celebrating that he has quit smoking (3 days now) a week and a half with him cutting down thanks to the Chantix and we are going to try and find a nice menu (aka diet plan) that will help cut down on sugar, and all of the things that need to be done.

He also is a caffeine drinker so this is going to be a tough one as he already quit smoking and I don't even know what to do here. I have half caff pods that he said he would 'try' next week. Rome wasn't built in a day after all.

He is supposed to be wearing a BiPAP for sleep apnea but has not done so since we got it. So that is another thing that we need to work on and I am hoping to get an appointment to go with him to see if there is a less invasive mask for him to wear. It affects him and me so this would help a lot as well.

I don't have any 'real/close' friends where we live but have my sister and his family to talk to. And, I appreciate any help/guidance/assistance/words of wisdom/advice/virtual hugs, etc. that anyone here can give.

Good luck on your journey together.

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//
~~

Was your husband having symptoms that led to his diagnosis?