Anyone have chronic lymphocytic leukemia (CLL)?

@mulle
You should listen to
Your Dr’s and make the final
Decision for yourself! No one can force you on treatment! It’s always your decision!

Personally I have a great relationship with my doctor and we make Informed decisions together!

I am on my third wave of treatments it’s never easy and
You must understand

There is No Cure but today’s medications are way better than when I started!

Good luck on your journey

Thanks Your words are powerful. My first 2 therapy’s side effect reactions to Calquence and Zanubrutinib were both the same unbearable burning pain. I begged for a fraction of the 60 pills. Insisted my system medication & vaccines have a very difficult time. My problem is my doctor argued my side effects were not from the therapy sending me to orthopedic’s & X-rays checking fusion and orthopedic repairs. It wasn’t. Now insisting my new symptom are not from the pills.
I now have $40K in prescriptions Ive been told to throw in the garbage.
Coincidentally a family member is now having the same severe painful burning side effects from an infusion and pill therapy for his surgically removed cancer and infusion & pill therapy is my next recommended therapy. Because my doctor insists none of her patients have had side effects
I’m hoping to communicate with more patients with my allergic reactions.
A friend has a genetic Leukemia &3 year keemo +pills+ stem cell transplant and has ended the intravenous keemo resulting in remission now.

Thanks. Words from patients are most valuable to me. I get it! My 2 therapies Calquence & Zanubrutinib both severe burning side effects. My next recommended is infusion& pills.
Coincidentally a family member had cancer surgically removed and is now on an infusion and pill therapy with exact severe side painful effects I had. The Second prescription I begged for 10 pills to try. I lasted 6 pills & the side effects were too painful to continue. Now, I have 2 prescriptions valued at $40,000.00 to throw in the garbage.
The worst part is my failing therapy’s leaves my body weaker causing symptoms and adding more abnormal blood test results.
I’m supposed to call the doctor about my next infusion&pill therapy & after taking to my family member I’m skeptical about installing a port& order a full 30 day prescription to have to throw another $15000.00 away if the side effects start again.

The worst part is if my body rejects another therapy? Sure insurance covers the medication but a total of 55K down the drain?
I’d like to hear from more patients about side effects.
Thousand Thanks

This is directed to the Administration. I have been interested in following the CLL group. I was disappointed how old the posts were. With the constant updates in medication and clinical trials, I thought this group would be very active.
The one group I have been part of is private and of all places Facebook. No medical advice is allowed. People in all stages .
The sharing of personal information about their experience is so important to hear it from someone who has or is going through treatment.
The administrator is very experienced. Is a patient. He has been part of seminars about CLL.
Please think about how you could update to encourage more participants.
Thank you for letting me share ....

Hi, diagnosed May 2022. Had hip replacement had a CBC. My WBC was high so the doctor at the hospital had a oncologist visit me. My tests results were, Muted , stage 2, no deletions. The only thing I have been watching is my fatigue and a slow spleen enlarging.
Numbers are stable.
With my insurance company change I needed all new doctor's not easy! The first CLL doctor was not a great match so next appointment going with a new doctor.
I'm 75 ...

@cindyjenco how you doin? Been monitored since 2022. Mid 2026 first therapies Calquence then zanubrutinib both the same formula and both caused feet, , calves, hands and forearms. The next recommended therapy is infusion & pills.

I was diagnosed in 2019 & started treatment earlier this year. I take Venclexta & Ibrutinib daily.
The medication is working great, all my bloods are pretty much normal, but the side effects can be a pain.
I get a fair bit of nausea & my guts aren't the best but if you just looked at my bloods you wouldn't even know I had CLL so it's worth the bit of discomfort.
I find the best thing for me is just having a positive attitude towards life.
Look after yourself xxx

@johnwhitley thanks your words are encouraging. good to hear you tolerate the medications side effects and the medication is normalizing your blood test results.
The first month my medication was tolerable and blood tests were returning to normal until sudden side effects. My biggest problem after the 2nd medication resulted in the same side effects numbers at the worst resulting in the more CLL symptoms. I will talk to the doctor again about the port. I don’t want a port unless I know the infusion is tolerable. I also have an appointment for a second opinion.

@mulle
My mom was diagnosed with CLL 3 years ago. She’s 86. When checked, it progressed to her liver, she was losing weight like crazy.
She opted to forego chemo and just do nutritional therapy through iv.
Her blood results are now normal and liver enzymes have also normalized. Looking at her, you’d never know she’s sick. Truly amazing!

Hello mulle, can you ( or others) elaborate on the nutritional therapy through iv ?
My next checkup is in two weeks, I'm currently Stage 0, but my Bloodwork in 2 weeks may change my status. So I'd like to be able to discuss this with my oncologist .
Thanks