I just discovered I have leukemia

Posted by adeleke212 @adeleke212, Dec 28, 2023

I had leukemia and i heard there’s no cure for it, so I’m going to die can anyone help if there’s treatment for blood cancer

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joeeduffy | @joeeduffy | Feb 3 12:01pm

In reply to @loribmt "Good morning, @joeeduffy, I promise you’re not alone here! This forum has been a lifeline to..." + (show)

@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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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.

joeeduffy | @joeeduffy | Feb 3 2:18pm

In reply to @champ9810 "Good luck on your journey together." + (show)

Thank you so much. I know we don't have many answers yet, but we are positive, strong and now have all of you 🙂

marlow2 | @marlow2 | Feb 3 5:24pm

In reply to @joeeduffy "Thank you so much. It is all very overwhelming and unexpected and I thank you so..." + (show)

When the type of Leukemia has chronic in front of it, it can be treated successfully. I have T Cell Large Granular Leukemia and it is a Chronic form of Leukemia. I'm very proud of your husband for giving up smoking. I lost 6 brothers to lung cancer. Not one of them was willing to give up smoking. I think that you were given a lot of sound advice on this forum.

Lori, Volunteer Mentor | @loribmt | Feb 3 6:04pm

In reply to @joeeduffy "Not particularly. He has very slightly higher white blood cell count a year or two ago..." + (show)

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. ☺️

Lori, Volunteer Mentor | @loribmt | Feb 3 6:06pm

In reply to @adeleke212 "I’m a family of 6 my parents are poor so there is no how i can..." + (show)

@adeleke212 I just wanted to check in with you to see how you’re doing and let you know I’ve been thinking about you.
I hope that you’re comfortable and feeling ok. Has there been any change for you? Were you able to get treament?

marlow2 | @marlow2 | Feb 3 9:11pm

In reply to @joeeduffy "Thank you so much. It is all very overwhelming and unexpected and I thank you so..." + (show)

If your husband was prescribed a BIPAP machine, that means that his sleep apnea is very serious. I was diagnosed with 2 kinds of sleep apnea in May of last year. It took me awhile to find the correct mask which is a nasal mask AirFit n30. I have to use tape for my mouth or a mouth guard since they wanted me to use a full mask. Like your husband, I didn't do well on the full face mask. I came from sleeping less than 2 hours a night to sleeping 7 hours a night. With my T Cell LGL, this has really helped me to get more energy. This will be very important for your husband to find a mask that works for him. There will be many benefits for his Leukemia and for your peace of mind.

aleeab | @aleeab | Feb 4 12:08pm

I too have leukemia, mine is CLL. It was quite a shock, when I complained of being so tired I needed to rest after a few minutes of garden work. Doc says no cure, but at level zero, we just have to wait and monitor blood regularly. After nearly a year, still at level zero with the recurring, worst hot flashes I have ever had. Even worse than the menopause ones. But, I'm able to do most everything I could do before the diagnosis, just slower and resting when I'm outside. Sunshine seems to help as long as I'm adequately covered with sunblock, long sleeves and a floppy hat. IF you research your type and level, work with your doc on any treatments he recommends, you be in a better frame of mind. The people here help with your frame of mind, they will give you virtual shoulders to cry on, kudos when things are going well and kicks in the butt when you need them. Do give them a chance, don't give up and talk to the God of you choice to give you strength.

aleeab | @aleeab | Feb 4 12:29pm

In reply to @joeeduffy "Not particularly. He has very slightly higher white blood cell count a year or two ago..." + (show)

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.

slkanowitz | @slkanowitz | Feb 5 8:40am

In reply to @joeeduffy "My husband was just diagnosed with CLL and I am a nervous wreck. We were hoping..." + (show)

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.

5qdeletion | @5qdeletion | Mar 9 4:39pm

My husband was diagnosed with acute myeloid leukemia on December 2023 flow cytometry tests that reveal a collection of differently labeled leukemia cells. His oncologist told us the test results at the end of February 2024- two months after knowing about the cytometry results.

The oncologist recommends zero treatment because he has stage 3 kidney disease, red cell blood cancer with a slow decline over six years, and is age 82.

Anyone?? Experience with an elderly person with acute myeloid leukemia, possible treatment? The oncologist is fatalistic, says call hospice. But it's been two months since flow cytometry revealed leukemia cells, and he is doing ok, tired as usual from his red cell cancer, but not rapidly declining.

Any hope for treatment that you know of?

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