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CLL Support

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All posts for March 2019

Worried mum

Hi I am fairly new hear and haven’t posted before. But I have read many posts and been really greatful to be amongst people who get it. My daughter has been...

Hi I am fairly new hear and haven’t posted before. But I have read many posts an...

Lexi1205

•5 years ago

3 Replies

What is a non chemotherapy treatment regimen to treat CLl

I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69...

I have just had my regular 6 week visit to my oncologist/haematologist .My readi...

Joffre1

•5 years ago

8 Replies

Back pain

I've recently developed a back pain that I have not experienced before. It's difficult to describe. It starts in the middle of my spine and then it radiates...

I've recently developed a back pain that I have not experienced before. It's dif...

MystyUK

•5 years ago

9 Replies

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Question about CLL doctor

Has anybody here consulted with Dr. Parikh Sameer at Mayo Clinic? If so, are you willing to share your experience? Thanks!

Has anybody here consulted with Dr. Parikh Sameer at Mayo Clinic? If so, are you...

Motoli

•5 years ago

2 Replies

Blood tests results what do they mean

Hi my results are as follows blood test for full blood count and iron Haemoglobin 103 Red cell 3.42 Hamacrit 0.304 Can someone let me know what it means

Hi my results are as follows blood test for full blood count and iron Haemoglob...

Brightonlady

•5 years ago

5 Replies

Lymphoma and Sjogrens

Can anyone please speak to the connection between lymphoma and Sjogrens? About 18 months before being diagnosed with lymphoma last August I started...

Can anyone please speak to the connection between lymphoma and Sjogrens? About 1...

Jemorgen

•5 years ago

6 Replies

Lowering mg of Imbrutinib

Can anyone share lowering 420 mg daily of Imbrutinib due to skin rash or breakage?

Can anyone share lowering 420 mg daily of Imbrutinib due to skin rash or breakag...

Zappymom12

•5 years ago

3 Replies

Ouch MOUTH SORES

I am on my second month of Ibrutinib , it started of great until this week I noticed how dry everything feels. My eyes and noses are really dry . But the...

I am on my second month of Ibrutinib , it started of great until this week I no...

Mellowbubble

•5 years ago

7 Replies

Venetoclax and Allopurinol

I am wondering how long you were kept on allopurinol after you started venetoclax.

I am wondering how long you were kept on allopurinol after you started venetocla...

profrich

•5 years ago

26 Replies

Acalabrutinib

When is the approval of acalabrutinib for front line treatment of CLL expected? Will it happen in 2019? thanks

When is the approval of acalabrutinib for front line treatment of CLL expected? ...

Motoli

•5 years ago

17 Replies

Diagnosed at 33 with cll and have discovered I've had it from early 20's

Hi, I have just been diagnosed with cll at the age of 33 and they said that they had got some of my old scans photos over 10 years ago which put me early 20's...

Hi, I have just been diagnosed with cll at the age of 33 and they said that the...

Hidden

•5 years ago

12 Replies

Flaxseed and Chia Seeds are safe?

Hi , I´m planning to improve the diet with chia and flaxseed , but I read that a person with CLL should not take raw food, its the same with the seeds? or...

Hi , I´m planning to improve the diet with chia and flaxseed , but I read that a...

C3PO1

•5 years ago

17 Replies

Venetoclax and weight loss early

Although all my numbers have improved substantially after almost two weeks on venetoclax (ALC 41000 to 9000; Hg 10.4 to 11.5, etc), I have lost weight and...

Although all my numbers have improved substantially after almost two weeks on ve...

profrich

•5 years ago

13 Replies

Newly diagnosed and needing guidance ...

Hello all, After a routine health check my partner has been confirmed with CLL... He has no obvious symptoms other than fatigue at the moment with a Lymphocyte...

Hello all, After a routine health check my partner has been confirmed with CLL.....

CILE

•5 years ago

18 Replies

Only God knows

My husband took one dose of Ibunitrib (3 pills) and passed away the next day from Sudden cardiac arrest.

My husband took one dose of Ibunitrib (3 pills) and passed away the next day fro...

margieono

•5 years ago

60 Replies

Free Educational Forums March 9 in Portland and March 16 in Houston

Hi, Hope to see some of you in Portland next Saturday and at MDACC a week later for our free CLL Society educational forums. I'll be at both. Details at...

Hi, Hope to see some of you in Portland next Saturday and at MDACC a week later ...

bkoffman

CLL CURE Hero•5 years ago

2 Replies

How long did it take to get insurance approval for Venetoclax?

I was diagnosed 11 years ago with CLL. I was 44. I did 6 months of chemotherapy which put me in remission for 10 years. A little over a year ago my WBC started...

I was diagnosed 11 years ago with CLL. I was 44. I did 6 months of chemotherapy ...

Panthermom

•5 years ago

2 Replies

Muscle cramps and bone aches

Hi ladies and gents. I'm having lot of the above problems. Taking imbrutinib 3 tabs per day. What is everyone else taking or using to try and combat this...

Hi ladies and gents. I'm having lot of the above problems. Taking imbrutinib 3 ...

Informationseeke

•5 years ago

8 Replies

Ibrutinib results

I am entering my fourth month of treatment. I saw my CLL specialist last Wednesday and the wbc have decided to go down after three months of rising. I feel...

I am entering my fourth month of treatment. I saw my CLL specialist last Wednesd...

Bsv39

•5 years ago

3 Replies

New York City -- CLL Patient Support Group Meeting Sunday March 10, 2019 3:00pm to 5:00pm 1305 York Ave, New York, NY (Manhattan)

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL...

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Gro...

lankisterguy

Volunteer•5 years ago

3 Replies

Looking to speak with people with CLL & polymyalgia rheumatica

janet61

•5 years ago

2 Replies

Kidney Infection

We finally got to a good Dr & he diagnosed my wife had a bad kidney infection. Also when conferring with her Dr’s at MDA they also said it wasn’t her back but...

We finally got to a good Dr & he diagnosed my wife had a bad kidney infection. A...

Momdds

•5 years ago

3 Replies

Nodes

I am on ww but my lymphs in neck are enlarged and my allergies have been acting up all winter but not actually sick. I had a ct recently and a node biopsy....

I am on ww but my lymphs in neck are enlarged and my allergies have been acting ...

showdog

•5 years ago

9 Replies

New compendium of quality CLL resources for patients + your hematologist

I am sharing a collection of high quality CLL resources for both patients and hematologists. First, the patient resources which include: patient...

I am sharing a collection of high quality CLL resources for both patients and he...

GlennSabin

•5 years ago

14 Replies

Still no treatment (UK)

Hi Everyone In my last post I thought my partner was about to start treatment, but after a 10 minute consultation at Kings he was told he seems to be managing...

Hi Everyone In my last post I thought my partner was about to start treatment, ...

Hm15

•5 years ago

7 Replies

IgA

My IgA serum: 36 Normal level: 70-400 Is this dangerous?

ava1967ir

•5 years ago

16 Replies

Hello

New here. I was diagnosed with CLL a little over a month ago. This a little scary. Just now found this group. Thank you for being here. It helps knowing I am...

New here. I was diagnosed with CLL a little over a month ago. This a little scar...

Spartan244

•5 years ago

11 Replies

T-PLL or AITL - looking for treatment advice please

Hi there, I am new here but looking for treatment advice. My mother is diagnosed with either T-PLL or AITL, FISH showing p17 in 2/3 of cells. She has undergone...

Hi there, I am new here but looking for treatment advice. My mother is diagnosed...

ingeanette

•5 years ago

9 Replies

CLL specialists in Costa Rica

Oh and are there CLL specialists in Costa Rica? Hoping to have a great time, but just in case.........

Oh and are there CLL specialists in Costa Rica? Hoping to have a great time, bu...

anapurna

•5 years ago

2 Replies

Antibiotics and CLL

I've got signs of a chest infection and am on an antibiotic which sounds sensible. However antibiotics can weaken my already compromised immune system? Any...

I've got signs of a chest infection and am on an antibiotic which sounds sensibl...

anapurna

•5 years ago

17 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2019

Worried mum

What is a non chemotherapy treatment regimen to treat CLl

Back pain

Question about CLL doctor

Blood tests results what do they mean

Lymphoma and Sjogrens

Lowering mg of Imbrutinib

Ouch MOUTH SORES

Venetoclax and Allopurinol

Acalabrutinib

Diagnosed at 33 with cll and have discovered I've had it from early 20's

Flaxseed and Chia Seeds are safe?

Venetoclax and weight loss early

Newly diagnosed and needing guidance ...

Only God knows

Free Educational Forums March 9 in Portland and March 16 in Houston

How long did it take to get insurance approval for Venetoclax?

Muscle cramps and bone aches

Ibrutinib results

New York City -- CLL Patient Support Group Meeting Sunday March 10, 2019 3:00pm to 5:00pm 1305 York Ave, New York, NY (Manhattan)

Looking to speak with people with CLL & polymyalgia rheumatica

Kidney Infection

Nodes

New compendium of quality CLL resources for patients + your hematologist

Still no treatment (UK)

IgA

Hello

T-PLL or AITL - looking for treatment advice please

CLL specialists in Costa Rica

Antibiotics and CLL

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