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My brother, age 62 when he was diagnosed with CLL and began treatment with acalabrutinib in 2020, within 3 months of taking this drug showed signs of confusion which we thought might be a mild stroke. An MRI was eventually done which showed an undetermind brain mass. After 2 biopsies, done within 3 months of each other, it was discovered it was an aspergilliosis fungal infection . Ibrutinib was known to possibly cause a brain fungus infection and acalabrutinib had no cases reported. My brother was, supposedly, the first reported case. You can google his case study by searching for "CLL patient develops brain fungus after taking acalabrutinib ". The published story didn't quite happen the way it was reported. They left out important details especially as to why there was a need for a second biopsy. I will say that within the first couple of months after taking acalabrutinib he did show remarkable results for his CLL, but it had to be discontinued. For a year his bloodwork still looked good even with taking nothing for his CLL. He was given a fungal treatment through a port right after the brain fungus diagnosis and eventually as an oral treatment and the fungus was slowly shrinking. However, in late September of 2021 he contracted covid and passed away October 9. I truly believe that since covid affects the lungs so severly that the fungas finally entered his lungs and either made the covid worse or it was the fungus alone or both. I might add that the way it was determined that the fungal infection was caused by acalabrutinib is because at the beginning he showed no other signs of a fungus in his sinuses or his lungs....just the brain. Also because the first generation of this BTK inhibitor did have reported cases of fungal brain infections.

Hi Stephan, I’m reaching out to you from the future 😁! It is September’24 and I finished listening to your podcast. Your words and demeanor were helpful - that is normal and matter of fact! Thank you. I hope your cancer has remained in remission. Be well! I truly hope that my MM and I follow a similar trajectory. Daniel

Most men in their 60's don't have enough testosterone to move the needle in a 16 week program that lacks intensity. Older men need much more time to move that needle because so many of them are dealing with sarcopenia, they need to do HIIT training which requires working with heart rates approaching 90% of max, there has to be an intensity to the workouts that is significant enough for them to consider dropping out, and they need to have enough testosterone in their system for the work they do to make a difference.

I have been diagnosed with much and cancer too, and bio and electronically too ,to gag me but always felt cll is cause

❤, thnx dr helen marr❤ 🎉

Excellent job, Matt. As a CLL patient diagnosed six months ago and a teacher too, I really admire your positivity. I am now finding it hard to accept that it is my new normal, but I will have to learn it. I have learned some from you already. See? you are a great teacher! Keep it up!

This is so well done. Thank you immensely.

It would be much more helpful if patients were asked to disclose their numbers on diagnosis. It provides important context to their stories/symptoms.

How long has anyone lived with CLL

How are you now?

My Dad did not recover after being given FCR.

The shingles vaccine has something in it called qs-21,i think it can boost the imune system against other types of infections as well i shingles,i think i am right about that.Maybe a doctor will comment on that.

WHAT ABOUT THE CAR T CELSS ? ON CLL AN EXPERT MEDICAL OPINION PLEASE ------ THANKS

Anyone newly diagnosed with CLL should watch this vidio,he explained it very well.I have been on watch and wait for 4 years.

Thank you. My wife was diagnosed in her 40's , it was a shocker obviously. She is in her early 50's now and never mentions it. See does have some genetic disposition that tends to better outcomes and is on a watch and wait program.

🤩 *Promo sm*

Thank you and more power to you ❤

Is the route published online?

Good luck. I bet it will be an amazing journey!👍

Thank you very much.😊

Thank you 👏☺️

Well done John. Hope all goes well.

Great presentation - many don't recognize how nerve racking going through treatment during the Covid pandemic was for us patients. It's still hard to get a feel for where my immunity is post treatment with Obin/Ven after achieving MRD status. Before treatment I felt nothing from 3 Covid shots... but after treatment, my Covid booster in Nov. hit me like a bus for 2 days - so I assume that's a sign my immunity has improved! But I can attest to the power of these drugs... after my first infusion of Obinutuzumab - just 10% of the full 1000 mg dose, my white counts fell from 254,000 to 54,000 in just 36 hours - we had to stop treatment and go on saline IVs for a week to avoid tumor lysis syndrome. And there was an infusion reaction... sharp drop in BP. The rest of the infusions and the ramp up on Veneteclax went quite smoothly though with no further side effects except for bouts of diarrhea once or twice a week. Amazing new drugs - it's great to see the progress being made on this disease.

Q and A are always the most interesting part of a webinar

Besides exercise what do you think about carnivore for battling CLL. I have been carnivore 2 years now have CLL but doc thinks eating anything is ok!! I will not eat the standard American diet

I’ve been on it for 6 months. No side effects or problems and my numbers are now normal. It’s amazing. My WBCs did shoot up immediately but came down quickly.

Thank you for sharing this study. It makes me want to exercise more frequently.

Someone who has cancer, or a blood cancer, already looks at diet. Since we need to watch such things potassium, we use a potassium diet to protect kidneys. From drugs.

As it was noted, it can take a significant number of years to harvest and make deductions from data, particularly with CLL. So, my broad question is - do those determining treatment plans (where the drugs are available) take early insight from such trials or is there a rule of thumb to wait for the evidence? If early signs suggested intermittency of a drug was favourable, is the knowledge there to at-least be considered or would that be seen as bad practice…a jump of the gun?

Thank you all for being so informative. It's great to hear from the Rock Stars of the CLL world. Again, many thanks.

Not ever getting covid vaccine!

Thank you so much. Your explanation really helped me see why I am having the treatment that I am currently undergoing.

This was a wonderful talk! Truly a work of love. Things couldn't be explained better. Thank you!

Can I register for any future trials?

Would Pilates be considered moderate or more?

Nice/thx for sharing

Great presentation.

Really good presentation, with really helpful slides. Thanks Dr. A.!

Wow! Superb talk! Now have much clearer understanding of CLL, and optimism regarding current and future treatments. Additionally, as mentioned in one of the comments (by @sammykatz8342), Prof Follows delivers his presentation with a welcome bedside manner.

There’s quite a bit of literature out there outlining the dangers of FCR, particularly with unmutated CLL and the potential for richters transformation. This seems somewhat hazardous information.

I would have to disagree with what you say is not required at diagnosis; or at least some of these tests ought to be done AS SOON AS POSSIBLE after CLL is diagnosed! I had a biopsy and fish testing right away when CLL was suspected. CLL/ SLL was suspected from a CT scan (!) after a car accident. So right away, the doctor knew what lymph nodes were involved through my body, and how enlarged they were, whether they might be pressing on organs. Then the surgical biopsy made the firm diagnosis. A surgical biopsy was determined to be the best, most accurate course as needle biopsies had failed to show my thyroid cancer in the past. The biopsy and fish testing then revealed my risk category (p17 del, tp53 mutation, IGHV unmutated status, etc.) which also guided treatment choices and informed the doctor that time to first treatment might be considerably shorter than for most. It was 8 months, and if I had changed oncologists sooner; treatment would have begun sooner. So much information gained about risk status, progression, treatment options when these tests are completed right away. The earlier the better.

So true is very traumatic to hear you or your love one has CLL .! Thanks for recognizing this with this program!

We shud have never abandoned normal. The only explanation for the non sensical way the govts responded is an agenda outside of Covid. Seems pretty elementary, but as u have made clear - fear causes people to act against their own best interests

I am a chronic lymphocytic leukemia patient. Currently, as per the prescription and suggestion of my oncologist, i am eating capsule Ibrutinib daily. I am feeling well and currently i am free from complication like fever etc. Would any doctor have a look on my case and come forward to give suggestion and advicesabout betterment and well being.

Dr Follows, could you help acquire Pirtobrutinib for me. I'm desperate as it looks like my last chance drug having been on and passed through all other treatments. I'm at the Freeman Hospital Newcastle under a superb Hematology team but it appears it is difficult to get hold of. Thank you for listening.

I am 58 today and suffering from chronic lymphocytic leukemia since one year. As per prescription of my doctor, presently i am taking daily two capsule of ibrutinib. I am alright but unfortunately i am losing my bodyweight. I am highly confused and lost about it . Would any one give some suggestion why it is so.

Very informative. A lot of the information has not been provided by my consultant. Some interesting questions to be asked at my next (telephone) consultation.

I am a cll patient battling since one year. I am consuming tab ibrutinib and feeling well but my bodyweight is deceeasing gradually. Please give suggestion for better living.

I am a cll patient. I am battling with this disease since one year. Please give suggestion for better living

Thank you Kate so much, We have had similar experiences . I have CLL and was diagnosed 6 years ago. was on Watch n Wait for around 4 yrs then Chemo in Lockdown which was quite nerve racking at first as I collapsed but got through that ok.The staff at Castle Hill Hospital are Wonderful. But I would like to see all GPs supporting more about this like they do with other things such as Diabetes etc. You are very nervous at first and do not really understand it all, if they had a nurse or someone like us who has a good knowledge and experience of CLL. I think it would really help a new patient with CLL.