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CLL Support

22,500 members • 38,645 posts

All posts for October 2019

Flu vaccine cuts infection severity and mortality according to US Centers of Disease studies. That's why it is recommended if you have CLL.

Given reports of people getting the flu after their flu vaccinations (there's no live virus, so getting the flu from the vaccination is impossible), or...

Given reports of people getting the flu after their flu vaccinations (there's no...

AussieNeil

Administrator•4 years ago

2 Replies

Newly diagnosed too, stage 0

I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53...

I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I unde...

patilin

•4 years ago

28 Replies

Ace -311-CL-311 UK

Hi I’ve just been randomised on Ace trial 311 and have been given arm A which constantly of Acalabrutinib 100mg daily then Venetoclax starting on 20mg on cycle...

Hi I’ve just been randomised on Ace trial 311 and have been given arm A which co...

Yidarmy69

•4 years ago

20 Replies

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My baby

They thought my 27 year old daughter had Lupus. But now, they want her to get to a blood specialist and have her on Oncology medicaid. She is so tiny. A slip...

They thought my 27 year old daughter had Lupus. But now, they want her to get to...

JustMeeAgain

•4 years ago

4 Replies

Lung Illnesses Associated with Use of Vaping Products. FDA Warns Public to stop using those containing Tetrahydrocannabinol (THC)

Those of us wanting to quit smoking and using e-cigarettes to achieve this, or anyone vaping cannabinoids including THC (the psychoactive cannabinoid) need to...

Those of us wanting to quit smoking and using e-cigarettes to achieve this, or a...

AussieNeil

Administrator•4 years ago

3 Replies

Nail breaking & ongoing UTI’s

My Dad, 87, has been on Umbruvika for about one year. He keeps getting urinary tract infections so he is on bactrim all the time on and off. Any suggestions of...

My Dad, 87, has been on Umbruvika for about one year. He keeps getting urinary t...

LoveLightLaughter

•4 years ago

22 Replies

Axillary lymph node

Hiii...is it normal to have axillary lymph node enlargement in mammography of a patient with cll?? The breast tissue and everything is normal, there's just a...

Hiii...is it normal to have axillary lymph node enlargement in mammography of a ...

Keyvanlvl

•4 years ago

24 Replies

DA-EPOCH-R treatments

I was diagnosed with diffuse large cell B lymphoma in Sept. immediately hospitalized for DA-EPOCH-R 24 hour treatments. A real shock to me as I envisioned a...

I was diagnosed with diffuse large cell B lymphoma in Sept. immediately hospital...

Msmerryc

•4 years ago

10 Replies

140mg of Ibrutinib per day

Hello everyone My wife Gabriella started Ibrutinib in January with the regular dose of 420mg/day as a first line treatment. She is 13q delation mutated and...

Hello everyone My wife Gabriella started Ibrutinib in January with the regular ...

Sergi

•4 years ago

72 Replies

Need a residential retreat? Can get to Bristol in the UK?

Has anyone heard of or done this Penny Brohn course? It is essentially a retreat for people with cancer. They have a way of helping us deal with cancer that...

Has anyone heard of or done this Penny Brohn course? It is essentially a retreat...

AdrianUK

•4 years ago

13 Replies

Very tired

Hello, I’m taking Imbruvica for 2 years, my numbers is excellent, but I feel very tired. In the morning I have energy, but afternoon is gone.

Hello, I’m taking Imbruvica for 2 years, my numbers is excellent, but I feel ver...

farber

•4 years ago

15 Replies

Watch and wait

I feel like a bit of a fraud here as all I have is a high WBC (52) and lymphocyte (48) count. I went to my GP today asking for a referral to the haematologist...

I feel like a bit of a fraud here as all I have is a high WBC (52) and lymphocy...

Kiwidi

•4 years ago

29 Replies

Mantle Cell Lymphoma

My husband just got the flow cytometry today. One of the markers CD23 is negative. I met the doctor and he diagnosed my husband with Mantle Cell Lymphoma....

My husband just got the flow cytometry today. One of the markers CD23 is negativ...

writepa

•4 years ago

24 Replies

Leukemia and Fixed Duration Treatment

Is there a combination of novel drugs and treatment regime for CLL that will allow me to stop taking drugs altogether?

Is there a combination of novel drugs and treatment regime for CLL that will all...

tola2222

•4 years ago

15 Replies

Ibrutinib and pneumonia

On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have...

On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune stat...

irish828

•4 years ago

11 Replies

Richter Transformation possible?

While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen,...

While I'm waiting for my husband Fish test, I'm reading about Richter transforma...

writepa

•4 years ago

19 Replies

Dr. Siddiqi on Rationale for the TRANSCEND CAR-T CLL 004 Trial in CLL/SLL

Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology &...

Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephens...

AussieNeil

Administrator•4 years ago

3 Replies

Thanks to everyone for helpfu hints on last post

Thanks everyone for their replies. Been trying socks last two days as I’ve not managed to get to pharmacy- had fevers & really painful cough. Hospital sent me...

Thanks everyone for their replies. Been trying socks last two days as I’ve not m...

Sepsur

•4 years ago

3 Replies

Is low IgM a side-effect of CLL drug treatment?

Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first antibody to be made by the body to fight a new infection. Does IgM...

Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is t...

Higsby

•4 years ago

10 Replies

Getting back to normal!!!!!

Hi all I’m back after losing half of right lung in the operation and it’s confirmed growths directly due to my cll. The consultant has ordered a further scan...

Hi all I’m back after losing half of right lung in the operation and it’s confir...

Walfo

•4 years ago

15 Replies

3-year cost comparison of novel agents/combos

Easy to see the cost benefits of time-limited therapy with venetoclax-obinutuzumab(Gazyva). source: https://twitter.com/GomezDLeonMD/status/1187722646034751488

Easy to see the cost benefits of time-limited therapy with venetoclax-obinutuzum...

avzuclav

•4 years ago

Be the first to reply

Struggleing

Ok I will show latest blood results 7 months on imbrutinib fist 3/4 months were absolutely fantastic! Now 7 month in and wbc down to 31k but fatigue has...

Ok I will show latest blood results 7 months on imbrutinib fist 3/4 months were ...

haposwald

•4 years ago

12 Replies

Vaccines, Ibrutinib toxicity,Dr. Rai on a cure, Dr Ghia on TP563 testing and ERIC

I warned that our website's pages would be busy through the end of the year. I tried to synthesize the vaccine guidelines referenced here and elsewhere in...

I warned that our website's pages would be busy through the end of the year. I ...

bkoffman

CLL CURE Hero•4 years ago

12 Replies

Blog posts

On my CAR-T blog, I share sad news about the loss of my CAR-T friend, Cherie https://cllsociety.org/2019/10/another-loss/ and my own good news, U-MRD 18 months...

On my CAR-T blog, I share sad news about the loss of my CAR-T friend, Cherie htt...

bkoffman

CLL CURE Hero•4 years ago

4 Replies

Watch and wait? How long?

Hi its been 5 years of W&W, i am frustrated, one of my symptoms besides fatique is pallor, i look like a ghost, it is pretty much all of the time. I also feel...

Hi its been 5 years of W&W, i am frustrated, one of my symptoms besides fatique ...

Mnikc

•5 years ago

7 Replies

New Review Article about Venetoclax

There is no doubt to me that Venetoclax is a very exciting development for us in CLL. And yet we don't seem to talk about it quite as much on here as...

There is no doubt to me that Venetoclax is a very exciting development for us in...

AdrianUK

•5 years ago

32 Replies

Treatment Options?

My question is to anyone who may of had a similar experience I have a pacemaker/defibrillator and am currently experiencing AF. How can this be rectify?...

My question is to anyone who may of had a similar experience I have a pacemaker...

Santos25

•5 years ago

1 Reply

Pathology materials - CLL

I booked an appointment at MD Andersen for my husband and they ask my husband to bring the pathology materials (slides and parafin blocks). But the hospital...

I booked an appointment at MD Andersen for my husband and they ask my husband to...

writepa

•5 years ago

3 Replies

Watching and waiting?

Hi all I am a kiwi living in what people believe to be a paradise- yes, New Zealand! It is in most respects but unfortunately not in terms of funding for...

Hi all I am a kiwi living in what people believe to be a paradise- yes, New Zeal...

Kiwidi

•5 years ago

34 Replies

Cll and Ibriutinib dosage

This is a great place to ask questions. My husband has been taking Ibriutinib for 15 weeks and his white blood count is still going up to 300,000. His dosage...

This is a great place to ask questions. My husband has been taking Ibriutinib fo...

120940

•5 years ago

22 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2019

Flu vaccine cuts infection severity and mortality according to US Centers of Disease studies. That's why it is recommended if you have CLL.

Newly diagnosed too, stage 0

Ace -311-CL-311 UK

My baby

Lung Illnesses Associated with Use of Vaping Products. FDA Warns Public to stop using those containing Tetrahydrocannabinol (THC)

Nail breaking & ongoing UTI’s

Axillary lymph node

DA-EPOCH-R treatments

140mg of Ibrutinib per day

Need a residential retreat? Can get to Bristol in the UK?

Very tired

Watch and wait

Mantle Cell Lymphoma

Leukemia and Fixed Duration Treatment

Ibrutinib and pneumonia

Richter Transformation possible?

Dr. Siddiqi on Rationale for the TRANSCEND CAR-T CLL 004 Trial in CLL/SLL

Thanks to everyone for helpfu hints on last post

Is low IgM a side-effect of CLL drug treatment?

Getting back to normal!!!!!

3-year cost comparison of novel agents/combos

Struggleing

Vaccines, Ibrutinib toxicity,Dr. Rai on a cure, Dr Ghia on TP563 testing and ERIC

Blog posts

Watch and wait? How long?

New Review Article about Venetoclax

Treatment Options?

Pathology materials - CLL

Watching and waiting?

Cll and Ibriutinib dosage

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