Looking for others with experience with CLL (Chronic Lymphocytic Leukemia)

2/12/2025 | Myself

[ProjectArcturus]

I was diagnosed with CLL a couple of years ago after having it for at least five years. I went from doctor to doctor trying to figure out what was wrong, getting dismissed by many. I had a PET scan recently and got results that it has progressed. Uptake in my throat and bone marrow, which wasn't in the scan I had two years ago. I've been having trouble swallowing for 2 1/2 years now. I went on a chemo drug called Calquence for a year after I was first diagnosed. They then switched me to Brukinsa. I went off them because I was dealing with a lot of fatigue and side effects and my doctor wanted to see if they would improve if I stopped for a while. They did not, since everything got worse after I stopped. During this time, my oncologist retired and I have a new one. He wants to wait a month so he can decide what treatment would work best for me. In the meantime, I'm on magic mouthwash for a while that my ENT prescribed me. I'm smelling an odd chemical burnt sugar smell that no one else can smell. I was hoping I would have gotten better by now, but I haven't. Now I'm dealing with this smell that has doctors baffled.

Advice, stories and prayers would be appreciated. I've looked up info on treatments and most people get diagnosed in their seventies. I'm in my forties. I previously had thyroid cancer and think the treatment gave me CLL. The lymph node swelling occurred right after the I-131 treatment. I've been looking at different oncologists/hematologists and looking to get a second opinion because I just don't feel comfortable with the new doctor.

[HollyB]

AML is a whirlwind of a diagnosis.
I wish they did not have you going back and forth for treatment.
While staying in the hospital is boring and difficult, with this disease - it just makes sense while your counts are low, plus you must be exhausted and just overall feeling unwell.

Induction is the first chemo treatment for AML. Induction will get you into immediate remission.
Each monthly treatment afterwards is called consolidation. consolidations are needed to kill off those few cells left and ‘hiding’ which can quickly multiply.

You may want to ask them what your induction treatment entails after they finish with the cns (central nervous system ) chemo.

Not all AML diagnosis requires a stem cell transplant. But, if there are aggressive mutations that may cause a relapse, they normally recommend it as they say getting back into remission is difficult.

I’m relieved they caught the CNS involvement.

I hope you’re doing ok. Most people haven’t heard of AML.
If you are on FB, there’s a couple of really good pages there for support.
https://www.facebook.com/share/g/1DJSx6j2en/?mibextid=wwXIfr

Feel free to message me anytime ok.

[GSWarrior]

“ plus you must be exhausted and just overall feeling unwell.”

Just the opposite. I walked into the ER with an hgb count of 5. They’re were like “how did you get here?” I couldn’t climb a flight of stairs without resting. It.s up to 7.5.

I’ve got some fatigue, but I feel better today than I have felt in weeks. I go for daily walks and have a good appetite. I don’t feel sick. It’s weird. I’m grateful for that. The doctors seem to know what they are doing.

[CheshireTheCat]

I am sorry to hear you are going through this.

I do not have any advice regarding leukemia.

I am a big tea drinker. I have found that ginger tea, turmeric tea, dandelion root tea, green tea, chamomile lavender teas, a couple of others calm my nerves, perk me up, make me sleepy, make feel as if toxins are being removed and inflammation is reduced, etc. Different teas do different things.

I put manuka honey in my Earl Grey. It is a natural anti viral and anti bacterial agent and also very nutritious.

Recently I discovered some lemongrass broth packets at Wal-Mart that calm me down and provide a bit o nutrition with a savory slightly sour flavor that is a nice change up from the teas.

I drink cold brewed hibiscus and cherry teas.

I would urge use to look into teas if you haven’t already.

Be sure to check for interactions, however, with your meds.

If I could only drink one tea, it would be turmeric tea. It is a powerful aid to the human system, calming without making you sleeping, anti inflammatory and anti bacterial and viral.

[ProjectArcturus]

Thank you for your replies everyone.

Yesterday I had more bloodwork. I’m being tested for gene deletions and mutations to see which treatment will work best. I forgot what they were called because there were so many. I want to know why they didn’t do that first after suffering for so long. I also researched more oncologists and found one that looks promising. I sent him my medical records from all my oncologists for him to review. Praying that this is the doctor that can help me.