Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for June 2023

CLL and ADRENAL FATIGUE

I wonder if anyone has experienced adrenal fatigue since being diagnosed with CLL, of after treatments? Thank you and sorry if my question isn't clear ... 🙃

I wonder if anyone has experienced adrenal fatigue since being diagnosed with CL...

•11 months ago

Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: Replay

Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: REPLAY below......

Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/S...

Volunteer•11 months ago

Blood test results

Hi I am on watch and wait and my Heamatocrit has gone up to 48 was 45 three months ago is it something to be worried about my spleen was upper limit with a...

Hi I am on watch and wait and my Heamatocrit has gone up to 48 was 45 three m...

•11 months ago

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Good news!

Just reached MRD and can stop the V pills in a few weeks. Woo hoo!!!! Since a trial unfortunately a 3rd Bone Marrow Biopsy. Ugh - but soon to be pill free....

Just reached MRD and can stop the V pills in a few weeks. Woo hoo!!!! Since a ...

•11 months ago

weirdness with exercise

rejoined my gym to try to get strength exercise into my life. It’s a gym with hard 45 min classes after three weeks of constant soreness (having difficulty...

rejoined my gym to try to get strength exercise into my life. It’s a gym with ha...

•11 months ago

Small cell vasculitis and epidermis demostosis

Back in November last year,I got covered in a rash which was awful . Treatment initially was antibiotics and suspect strep infection. And then as it kept...

Back in November last year,I got covered in a rash which was awful . Treatment ...

•11 months ago

Has anyone with CLL on Acalabrutinib been prescribed Propafenone to counter highpertension and fast pulse?

I was given the option by the cardiologists I saw in ER for atrial fibrilation. for now, I take 2.5 mg of Sandoz Bisoprolol once a day. and had to half my...

I was given the option by the cardiologists I saw in ER for atrial fibrilation. ...

•11 months ago

W&W, Sepsis, Pneumonia,Cellulitis, FEVERS ! - ???

Had my first visit to the Hematologist . He was patient, he was kind , he was very informative and most important to me , he asked me what my questions and...

Had my first visit to the Hematologist . He was patient, he was kind , he was v...

•11 months ago

POST 3 - CAR-T cell therapy

Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of...

Since my last post things have been ticking over with regular blood tests, Clini...

•11 months ago

Gardening hazards

A couple of weekends ago something in the garden penetrated the skin of my fingertip, which then turned septic. When I could feel the infection spreading down...

A couple of weekends ago something in the garden penetrated the skin of my finge...

•11 months ago

When is it time?

This is more about my experience with W&W and hopefully it might help others who might be on watch and wait. Everyone is different and as we know, deciding...

This is more about my experience with W&W and hopefully it might help others who...

•11 months ago

when start venclexta

I just did first Obinutuzumab infusion. First day of 100cc hit me hard but second of 900cc was better count of WBC count went from over 12000 to a little over...

I just did first Obinutuzumab infusion. First day of 100cc hit me hard but seco...

•11 months ago

New Comer

Hi All,I have been diagnosed with Cll since last June. Have partial deletion chromosone 17 as well as unmutated IGHV. Non symptomatic- Watch and Wait period....

Hi All,I have been diagnosed with Cll since last June. Have partial deletion chr...

•11 months ago

lumoxiti treatment

I have been offered lumoxiti treatment and I have to say I am reluctant due to the listed toxicities…..anyone have treatment stories please

I have been offered lumoxiti treatment and I have to say I am reluctant due to t...

•11 months ago

Robinsons "Fruit & Barley" contains grapefruit

My wife bought the above as a change from the usual boring old Orange. Only by idle chance did I notice that one of the ingredients is grapefruit, along with...

My wife bought the above as a change from the usual boring old Orange. Only by i...

•11 months ago

Anyone experienced debilitating fatigue when going off Acalabrutinib?

After going to ER a couple of times because of hypertension, irregular heartbeats, and fast pulse, my oncologist recommended stopping the meds I had been...

After going to ER a couple of times because of hypertension, irregular heartbeat...

•11 months ago

Fever and low pulse and high heart rate

I have started with a bad cold with a sore throat, cough and temperature of 37.9 and a low pulse and fast heart rate. Just been put on antibiotics for chest...

I have started with a bad cold with a sore throat, cough and temperature of 37.9...

•11 months ago

Watch and Wait - Thanks to All

Just want to thank Neil, SofiaDeo, CoachVera55, Big-Dee , Newdawn, CLLerinOz AND ALL the folks who contribute. Tomorrow will mark 4 months since being...

Just want to thank Neil, SofiaDeo, CoachVera55, Big-Dee , Newdawn, CLLerin...

•11 months ago

MRD Test

After 14 months on Acalabrutinib and Venetoclax, C91.10 Chronic lymphocytic leukemia of B-cell type not having achieved remission. Looks like I failed. 😷

After 14 months on Acalabrutinib and Venetoclax, C91.10 Chronic lymphocytic leu...

•11 months ago

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