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CLL Support

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All posts for December 2020

Imbruvica and macular degeneration

Has anyone developed macular degeneration of the eyes while on imbruvica?

thezman360

•3 years ago

8 Replies

Imbruvica cause AFIB

Has anyone developed AFIB after being on Imbruvica?

thezman360

•3 years ago

8 Replies

Help going back on treatment

Has anyone had trouble when going back on Imbruvica after being off for 5 months because of Covid? I can't stop from going up and trying not to get A-Fib...

Has anyone had trouble when going back on Imbruvica after being off for 5 month...

156MA019

•3 years ago

2 Replies

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Ibrutinib and feet swelling

Been on Ibrutinib for 2 years now and feet and legs are swollen. Any one else had these symptoms? Everything else ok

Been on Ibrutinib for 2 years now and feet and legs are swollen. Any one else h...

Woodhurst

•3 years ago

12 Replies

2 Physicians with CLL! Join CLL Society for a CLL Society/ FaceBook Live event Dec. 16 and hear their stories live!

2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share...

2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday ...

bkoffman

CLL CURE Hero•3 years ago

2 Replies

Update to swollen tonsils

Started treatment with Imbruvica in Aug.the swelling is now gone and will remain on this pill for quite awhile i hope. Everything at this time is going great...

Started treatment with Imbruvica in Aug.the swelling is now gone and will remain...

podris

•3 years ago

3 Replies

Reduced dose Acalabrutinib

Acalabrutinib keeps my CLL in check but gives me neutropenia. One strategy would be to cut the usual dose in half to 100 mg/day. Does anyone have experience...

Acalabrutinib keeps my CLL in check but gives me neutropenia. One strategy would...

john-doe

•3 years ago

1 Reply

Concise Summary of the Pfizer Phase III Data and an Update on Eligibility (USA Patients)

Here is a link to an excellent, concise summary of Pfizer's Phase III data for their COVID-19 vaccine. At the end it also provides links to the complete FDA...

Here is a link to an excellent, concise summary of Pfizer's Phase III data for t...

cujoe

•3 years ago

9 Replies

Looking for a fifth line of CLL treatment

I’m 55 and on my fourth line of treatment in 4 years: BR, Ibrutinib, Venetoclax, Acalabrutinib. And it looks like I’ll need a fifth soon. The acalabrutinib...

I’m 55 and on my fourth line of treatment in 4 years: BR, Ibrutinib, Venetoclax,...

john-doe

•3 years ago

20 Replies

Best use of time while waiting on FISH panel

Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so...

Hello all, I just found this group, and am so grateful for this type of resource...

MrsCc6

•3 years ago

18 Replies

Ibrutinib

Hi , Can you get Ibrutinib treatment in NHS and is it good

al444

•3 years ago

6 Replies

Has anyone tried Low Dose Ibruntnib?

I’ve been on Ibruntnib since 14 months ago. My doctor asked me to lower the dose from 3 tablets(420mg) to (280mg) without any explanation for the reason except...

I’ve been on Ibruntnib since 14 months ago. My doctor asked me to lower the dose...

ANA4

•3 years ago

52 Replies

Autoimmune Link

What is the link of autoimmune disorders and CLL? Is one susceptible to CLL if they have had autoimmune disease?

What is the link of autoimmune disorders and CLL? Is one susceptible to CLL if ...

PointReyes

•3 years ago

12 Replies

Blood test for chromosomal alterations

My husband was diagnosed with CLL in December 2019. He is currently on watch and wait. This news left us devastated at first. I have recently become a member...

My husband was diagnosed with CLL in December 2019. He is currently on watch and...

ForeverHealthy

•3 years ago

5 Replies

Vaccine on or off treatment

Will ask MD but wondering... If off ibrutinib for a week do to a procedure... how could this affect vaccine response if it happens shortly before, shortly...

Will ask MD but wondering... If off ibrutinib for a week do to a procedure... ho...

Davidcara

•3 years ago

4 Replies

American Society of Hematology (ASH) 2020 Virtual meeting key updates in the treatment of CLL

The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showcased key updates in the treatment and management of hematological malignancies....

The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showca...

lankisterguy

Volunteer•3 years ago

4 Replies

covid vaccine

hi all its been a while since last post iam on my 5 fcr this Tuesday and i can tell you this as been the hardest task i have ever done the constant worry of...

hi all its been a while since last post iam on my 5 fcr this Tuesday and i can t...

kel555

•3 years ago

12 Replies

Coping with fatigue.

I have recently been diagnosed withCLL and am finding it challenging coping with the constant tiredness and lethargy.Any tips?

I have recently been diagnosed withCLL and am finding it challenging coping with...

Farni

•3 years ago

9 Replies

Confused by bloodwork

Had flow cytometry saying “apparent” loss of p17 and TP53 and two subsequent FISH tests saying TP53 normal. Also a recent WBC in normal range (was previously...

Had flow cytometry saying “apparent” loss of p17 and TP53 and two subsequent FIS...

Mend123

•3 years ago

5 Replies

Mom recently diagnosis with CLL. On W&W. Do you feel limited by CLL? Does it effect your relationships with your grandkids?

Hi all- My mom is current stage zero, no swollen lymph nodes. Just an elevated white count. Overall, pretty healthy just a little tired. I am concerned about...

Hi all- My mom is current stage zero, no swollen lymph nodes. Just an elevated w...

aaegan9

•3 years ago

16 Replies

Can my mother take hemp oil tablets with Melatonin to help her sleep whilst taking Ibrutinib?

My Mum struggles sleeping, she is also on I Ibrutinib. I recently bought her some hemp oil tablets with melatonin to see they helped her sleep. Is this ok with...

My Mum struggles sleeping, she is also on I Ibrutinib. I recently bought her som...

MICHAELC74

•3 years ago

11 Replies

CLL Society ASH 2020 Day 4 Updates and Wrap-Up Less fun! No hugs. But we are leaving with a lot of treats!

CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final day of ASH 2020, the American Society of Hematology Annual meeting and...

CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final da...

bkoffman

CLL CURE Hero•3 years ago

5 Replies

Imbruvica cost

I don't think I financially qualify for assistance but the cost of Imbruvica will keep my wife working longer than planned and keep me off of M Medicare....

I don't think I financially qualify for assistance but the cost of Imbruvica wil...

estaff01

•3 years ago

68 Replies

Vaccines - AstraZeneca, Moderna and Pfizer - Which one for CLL Patients.

I had a telephone consultation with my CLL consultant today (I would consider her to be a UK expert in CLL). We discussed 3 of the vaccines, AstraZeneca,...

I had a telephone consultation with my CLL consultant today (I would consider he...

RobertCLL

•3 years ago

17 Replies

Non stop sneezing

After 8 months on /Ibrutinib I suddenly started sneezing up to 10 times at least on and off . I thaught maybe my cpap machine causing that or just a sinus...

After 8 months on /Ibrutinib I suddenly started sneezing up to 10 times at least...

Kmegood

•3 years ago

9 Replies

Cll and covid vaccine uk

Could anyone shed any light about the covid vaccine that is now available in the UK in regards to CLL my dad who is 80 and has stage 4 lymphoma was diagnosed...

Could anyone shed any light about the covid vaccine that is now available in the...

Suskime

•3 years ago

15 Replies

Richter’s Transformation

Hello family. I hope everybody is fine. I feel good, the only thing is the joints that are destroying me with the treatments. My knees hurt a lot. On the other...

Hello family. I hope everybody is fine. I feel good, the only thing is the joint...

Priss69

•3 years ago

21 Replies

Acalabrutinib approved

Hi everyone As of November 25 , Acalabrutinib has been approved as a mono therapy for second line treatment in France for patients not doing well on...

Hi everyone As of November 25 , Acalabrutinib has been approved as a mono thera...

Sergi

•3 years ago

5 Replies

Dr. Fauci shares his recommendation that immunosuppressed patients with blood cancers, like us, get the vaccine, because some immunity is be

ASH 2020 Day 1 Update: ASH 2020 officially started early Saturday Dec. 5th with a fireside chat between ASH president, Dr. Stephanie Lee and Dr. Anthony Fauci....

ASH 2020 Day 1 Update: ASH 2020 officially started early Saturday Dec. 5th with ...

bkoffman

CLL CURE Hero•3 years ago

24 Replies

When will we know if this new covid vaccine is safe for those of us with CLL and taking Imbruvica?

IMBRUVICA AND COVID VACCINE

duffymcgrif

•3 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2020

Imbruvica and macular degeneration

Imbruvica cause AFIB

Help going back on treatment

Ibrutinib and feet swelling

2 Physicians with CLL! Join CLL Society for a CLL Society/ FaceBook Live event Dec. 16 and hear their stories live!

Update to swollen tonsils

Reduced dose Acalabrutinib

Concise Summary of the Pfizer Phase III Data and an Update on Eligibility (USA Patients)

Looking for a fifth line of CLL treatment

Best use of time while waiting on FISH panel

Ibrutinib

Has anyone tried Low Dose Ibruntnib?

Autoimmune Link

Blood test for chromosomal alterations

Vaccine on or off treatment

American Society of Hematology (ASH) 2020 Virtual meeting key updates in the treatment of CLL

covid vaccine

Coping with fatigue.

Confused by bloodwork

Mom recently diagnosis with CLL. On W&W. Do you feel limited by CLL? Does it effect your relationships with your grandkids?

Can my mother take hemp oil tablets with Melatonin to help her sleep whilst taking Ibrutinib?

CLL Society ASH 2020 Day 4 Updates and Wrap-Up Less fun! No hugs. But we are leaving with a lot of treats!

Imbruvica cost

Vaccines - AstraZeneca, Moderna and Pfizer - Which one for CLL Patients.

Non stop sneezing

Cll and covid vaccine uk

Richter’s Transformation

Acalabrutinib approved

Dr. Fauci shares his recommendation that immunosuppressed patients with blood cancers, like us, get the vaccine, because some immunity is be

When will we know if this new covid vaccine is safe for those of us with CLL and taking Imbruvica?

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