Posts - CLL Support | HealthUnlocked

CLL Support

22,625 members • 38,854 posts

All posts for March 2018

Food vs supplements

My oncologist agrees with Green tea and turmeric being beneficial for CLL but she prefers using turmeric powder in food and drinking green tea as opposed to...

My oncologist agrees with Green tea and turmeric being beneficial for CLL but sh...

CLLmoxie

•6 years ago

21 Replies

Acalabrutinib and side effects

I have been on Acalabrutinib for over 2 1/2 years, and my blood numbers are stable within normal range. I now have to go for blood draw and CT scans only...

I have been on Acalabrutinib for over 2 1/2 years, and my blood numbers are stab...

Ramses

•6 years ago

7 Replies

Side Effects from Pneumonia Shot

I had a streptococcus pneumonia shot a few days ago - location of shot painful & now I have swollen & painful lymph nodes on the underside of that arm. Anyone...

I had a streptococcus pneumonia shot a few days ago - location of shot painful &...

SAMSON44

•6 years ago

9 Replies

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Thoughts and prayer needed

It has been sometime since I last posted. I started on imbruvica 140mg three daily. I started December 22,17. This was after two biopsy on liver and lung....

It has been sometime since I last posted. I started on imbruvica 140mg three da...

Sallyurnotal

•6 years ago

46 Replies

Gamma globulin

Today I go for my monthly gamma globulin infusion I usually do well except I get very tired and at times nauseous. Anyone here gets these infusions? I have...

Today I go for my monthly gamma globulin infusion I usually do well except I get...

MartiP2009

•6 years ago

7 Replies

FLAIR trial - restrictions

My dad has CLL and requires treatment. He has been offered the opportunity to join the FLAIR trail but yesterday's appointment hit a sticking point, he also...

My dad has CLL and requires treatment. He has been offered the opportunity to jo...

CMSherman

•6 years ago

7 Replies

Time to share

This is my first actual post, so apologies for its length, but have responded to other post’s on here. I am one of those silent types you see mentioned, my...

This is my first actual post, so apologies for its length, but have responded to...

Dell49

•6 years ago

39 Replies

Flair Trial and Co- Trimoxazole

Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went yesterday for my 3 monthly check. Bloods and examination and all Is good ,...

Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went ...

Chuddie48

•6 years ago

5 Replies

Fatigue!

Whilst being overwhelmed yet again with fatigue, I started to reread any information about dealing with fatigue. It seems to me that the gps and consultant...

Whilst being overwhelmed yet again with fatigue, I started to reread any informa...

catmad1

•6 years ago

3 Replies

Guidelines for Diagnosis, Indications for Treatment, Response Assessment and Supportive Management of Chronic Lymphocytic Leukemia

These new guidelines were just published today, but Blood Journal has them paywalled. 😬 Patients can request access to the paper, by emailing Blood and giving...

These new guidelines were just published today, but Blood Journal has them paywa...

Cllcanada

Second Opinion CLL

Just a side note to all my Unlocked friends. My first Oncologist tested me (bone Marrow sample and blood test) and told me I had stage 2 lymphoma. This was a...

Just a side note to all my Unlocked friends. My first Oncologist tested me (bone...

barger1951

•6 years ago

8 Replies

Just diagnosed with CLL.

Well today I was diagnosed with CLL. I did have to have two iron transfusions. Still waiting on my biopsies. Here to learn all I can.

Well today I was diagnosed with CLL. I did have to have two iron transfusions. ...

Mamawof25

•6 years ago

21 Replies

Outcomes of haploidentical stem cell transplantation for chronic lymphocytic leukemia: a retrospective study

An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue...

An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patien...

Cllcanada

Foods to have and avoid for lymph flow and CLL

Does anyone have a definitive lists of foods that are good for the lymph system, and particularly foods to avoid. I am early CLL Watch & Wait but the lymph...

Does anyone have a definitive lists of foods that are good for the lymph system,...

Hidden

•6 years ago

29 Replies

What change your life

Hello i am diagnosed cll 3 month ago( my english iş very bad ) i have not another disease my wbc30and 13q deletion i am in w&w a new hemogram wbc38 i want try...

Hello i am diagnosed cll 3 month ago( my english iş very bad ) i have not anothe...

Hidden

•6 years ago

7 Replies

Chickenpox and shingles

Question: if never had chickenpox do we need to have the shingles vaccine? Or simple...Can we get shingles if never had chickenpox? Also can we have a blood...

Question: if never had chickenpox do we need to have the shingles vaccine? Or si...

Elliot43

•6 years ago

9 Replies

Green tea

Anyone using green tea pills? Have a lovely day!

debcesq

•6 years ago

23 Replies

CLL and starting initial treatment

Diagnosed with CLL about 3 months ago, platelet count decreased to 76000 and hemoglobin 5.7 and was suggested to start treatment. Does this data alone...

Diagnosed with CLL about 3 months ago, platelet count decreased to 76000 and hem...

mahesh_uk

•6 years ago

4 Replies

Anyone experiencing muscle and joint pain on Venetoclax?

I am having a tough time on Ven. I have been dealing with Gastro issues and now lots of muscle and joint pain. I am on Ven 7 months now, and the side effects...

I am having a tough time on Ven. I have been dealing with Gastro issues and now ...

ReneeSusan

•6 years ago

10 Replies

SLL, nodules and secondary cancers

Hi, Diagnosed with SLL and kidney cancer in 2016. CT of lung 1/2018 and PET/CT 3/9/18 from ears to thigh shows lung nodules doubled in size and number in 7...

Hi, Diagnosed with SLL and kidney cancer in 2016. CT of lung 1/2018 and PET/CT...

Judyanne

•6 years ago

21 Replies

I'm tired....

So... started Ibrutinib at the beginning January as a 2nd line treatment. Note - this is a 'rant or rather - feeling sorry for myself post'!! Had a...

So... started Ibrutinib at the beginning January as a 2nd line treatment. Note ...

UKfulloflife

•6 years ago

10 Replies

48 months after last FCR Treatment!

For almost four years I finished my 6th cycle of FCR. Afterwards my blood showed MRD neg. my blood counts improved rapidly after treatment and all the years...

For almost four years I finished my 6th cycle of FCR. Afterwards my blood showed...

seoul

•6 years ago

17 Replies

Low WBC

I have a granddaughter who has Down Syndrome. Her WBC is low, 3, and ANC is 1.1. I know both are low and trending slightly down but I am unsure of the meaning....

I have a granddaughter who has Down Syndrome. Her WBC is low, 3, and ANC is 1.1....

Fant1924

•6 years ago

3 Replies

Hair loss

Hi everyone Has anyone lost hair with ventaclax

581959

•6 years ago

40 Replies

Pain & night sweets

Pain rt Low rib area, night sweets, swelling in arm folds, behind knees, groin pain, feels like veins are swollen throughout my body, fatigue, 5 years out...

Pain rt Low rib area, night sweets, swelling in arm folds, behind knees, groin ...

Peggy98072

•6 years ago

4 Replies

Starting Ibrutinib-Or Not?

Hello I'm new to this group. My mom, age 75, was just diagnosed with CLL with 17p deletion. She has no symptoms whatsoever except that her spleen is enlarged...

Hello I'm new to this group. My mom, age 75, was just diagnosed with CLL with 1...

tealynda67

•6 years ago

10 Replies

Ibrutinib and joint pain

I have been on Ibrutinib to treat my CLL for six weeks now. I am also on 100 mg of Allopurinol to remedy the Uric Acid build-up. However, I am suffering from...

I have been on Ibrutinib to treat my CLL for six weeks now. I am also on 100 mg ...

Mike-72

•6 years ago

14 Replies

Sad day.

Today is a sad day as my beloved Colin,passed away last night after his CLL relapsed and he had pneumonia. He is now,at peace after a 17 year battle with CLL....

Today is a sad day as my beloved Colin,passed away last night after his CLL rela...

Pat1954

•6 years ago

81 Replies

Body sweats at nights

How do people with CLL handle body sweats? - change sheets every day - change pj’s every night - wash hair every day? Mimi

How do people with CLL handle body sweats? - change sheets every day - change pj...

Mimi4times

•6 years ago

41 Replies

Thoughts??

I've got a lymph node in my neck that swells roughly every 3 months. It is very painful and last measurement was 3 cm. I haven't been able to get a biopsy...

I've got a lymph node in my neck that swells roughly every 3 months. It is very ...

Klajoie2

•6 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2018

Food vs supplements

Acalabrutinib and side effects

Side Effects from Pneumonia Shot

Thoughts and prayer needed

Gamma globulin

FLAIR trial - restrictions

Time to share

Flair Trial and Co- Trimoxazole

Fatigue!

Guidelines for Diagnosis, Indications for Treatment, Response Assessment and Supportive Management of Chronic Lymphocytic Leukemia

Second Opinion CLL

Just diagnosed with CLL.

Outcomes of haploidentical stem cell transplantation for chronic lymphocytic leukemia: a retrospective study

Foods to have and avoid for lymph flow and CLL

What change your life

Chickenpox and shingles

Green tea

CLL and starting initial treatment

Anyone experiencing muscle and joint pain on Venetoclax?

SLL, nodules and secondary cancers

I'm tired....

48 months after last FCR Treatment!

Low WBC

Hair loss

Pain & night sweets

Starting Ibrutinib-Or Not?

Ibrutinib and joint pain

Sad day.

Body sweats at nights

Thoughts??

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