Posts - CLL Support | HealthUnlocked

CLL Support

22,528 members • 38,696 posts

All posts for June 2017

Post FCR

Two months after FCR. Dr. said my numbers should grow as the weeks progress. Started therapy due to low platelets, not high WBC. My whites are .09 and platlets...

Two months after FCR. Dr. said my numbers should grow as the weeks progress. Sta...

Rprdoom

•7 years ago

2 Replies

Health Check: what’s the right way to blow your nose?

With our compromised immune systems, a common cold can lead to secondary bacterial infections requiring antibiotics which can progress into serious and even...

With our compromised immune systems, a common cold can lead to secondary bacteri...

AussieNeil

Administrator•7 years ago

1 Reply

Reassessment of Anti-CD20 Therapy in Lymphoid Malignancies: Impact, Limitations, and New Directions (Rituximab, Ofatumumab and Obinutuzumab)

'The addition of anti-CD20 monoclonal antibodies to the treatment of B-cell malignancies has dramatically affected the field as well as the lives of...

'The addition of anti-CD20 monoclonal antibodies to the treatment of B-cell mali...

AussieNeil

Administrator•7 years ago

3 Replies

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Anyone 13 del Igvh mutated on Ibrutinib

Is there anyone out there that has 13 del igvh mutated and chose Ibrutinib for first line treatment? If so how are side effects and is it working

Is there anyone out there that has 13 del igvh mutated and chose Ibrutinib for ...

Lindab127

•7 years ago

9 Replies

Belly button pain on ibrutinib

Had a tender belly button for the last day not terrible just tender to touch wondered if it could be a side effect of ibrutinib I get the aches in joints etc...

Had a tender belly button for the last day not terrible just tender to touch won...

cartwheels

•7 years ago

2 Replies

Hair dye on ibrutinib?

Hi guys. Has anyone dyed their hair while on Ibruitinib? As far as I know it is an inhibitor rather than chemo.

Hi guys. Has anyone dyed their hair while on Ibruitinib? As far as I know it i...

KAS8

•7 years ago

7 Replies

I have enjoy reading this site for a while, this is first post. Anyone have experience with Alpha Lipoic Acid?

I have been treated for CLL for 10 years now, chemo until a year and a half ago when I started Imbruvica. I had some neuropathy the last few years and now...

I have been treated for CLL for 10 years now, chemo until a year and a half ago ...

Nracll1944

•7 years ago

13 Replies

Possible consequences of CLL for your body

Hi, besides SLL i have a lot of damage to my spine (which of cause causes pain) severe varicose veins (which also causes pain) and coeliac disease. I am 54...

Hi, besides SLL i have a lot of damage to my spine (which of cause causes pain) ...

Anja-Jantina

•7 years ago

6 Replies

Allergic Reaction

I started taking Imbruvica recently, but had to stop after only 11 doses because I developed dark spots first on my face and nose but then a lesion on my...

I started taking Imbruvica recently, but had to stop after only 11 doses because...

Bluejacket

•7 years ago

6 Replies

Free CLL Educational Webinar about Lab Tests

Hi all, Have you ever wondered what follow-up tests will you or your loved one need after initial CLL testing? What tests should be repeated and when? Join us...

Hi all, Have you ever wondered what follow-up tests will you or your loved one ...

tclementi

•7 years ago

Be the first to reply

Feinstein Institute Scientist Recognized for Innovative CLL Research

Feinstein Institute for Medical Research Instructor Shih-Shih Chen, PhD, is continuing the Institute's tradition of innovating the diagnosis and treatment of...

Feinstein Institute for Medical Research Instructor Shih-Shih Chen, PhD, is cont...

Cllcanada

Unsure and a little nervous

Well I have been on ibrutinib for over 4 1/2 yrs now and I guess my body has started to become resistant to it.I was told when I started it would probably be...

Well I have been on ibrutinib for over 4 1/2 yrs now and I guess my body has st...

Granny12

•7 years ago

6 Replies

Not sure what to say

We saw Dr Shuh for the first time, hubbys HB has dropped to 8.1 but wbc was 85, platelets were 139 He is no longer suffering with iron defiancy anaemia, that...

We saw Dr Shuh for the first time, hubbys HB has dropped to 8.1 but wbc was 85, ...

Susiecarer

•7 years ago

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AlC drops

Hi Everyone Happy to say my ALC reading dropped slightly last month by 2 points down from 59 to 57 after a 10 point increase the month before when it was 49....

Hi Everyone Happy to say my ALC reading dropped slightly last month by 2 points ...

Hidden

•7 years ago

Be the first to reply

Being on ibrutinib for 3 and a half months and had a pathological femur neck fracture. Biopsy indicated CLL infiltration on bone.

My mother (82yo) broke the neck of her right femur one month ago and had a total hip replacement (total hip arthroplasty) few days later. She was on ibrutinib...

My mother (82yo) broke the neck of her right femur one month ago and had a total...

J-123

•7 years ago

2 Replies

Glad I found this group

Hi! My name is Deana and I was diagnosed in 2008 at the age of 40. In 2010 I had my first round of chemo and had a reaction to Rituxan but continued on with...

Hi! My name is Deana and I was diagnosed in 2008 at the age of 40. In 2010 I had...

DRADCLIFF

•7 years ago

7 Replies

Richters transformation

What is the prognosis for a person with richters transformation?

Feeb7

•7 years ago

49 Replies

CLL in the Central Nervous System: Any Experience with Cytarabine (Cytosar)?

Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appears to be associated with lesions observed in the brain lining and behind both my...

Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appear...

Eagle5327

•7 years ago

4 Replies

HealthUnlocked iOS app released for iPhone worldwide today

This is something users have been asking for following the successful launch of the app in the UK earlier this year. Neil

This is something users have been asking for following the successful launch of ...

AussieNeil

Administrator•7 years ago

2 Replies

Magnetic bracelets

Hi all, I was diagnosed 4 years ago now, still on w&w + 3 weekly IVIG transfusions, & nave been suffering for years with arthritis in my right thumb (I am...

Hi all, I was diagnosed 4 years ago now, still on w&w + 3 weekly IVIG transfusio...

Alan20

•7 years ago

6 Replies

Peripheral Neuropathy

Hi everyone. Need some advice please. I'm w and w for just over 2 years now. No treatment yet. Getting myself worked up as I have had tingling in both my feet...

Hi everyone. Need some advice please. I'm w and w for just over 2 years now. No ...

Cindy1462

•7 years ago

14 Replies

Peripheral Neuropathy

Hi everyone. Need some advice please. I'm w and w for just over 2 years now. No treatment yet. Getting myself worked up as I have had tingling in both my feet...

Hi everyone. Need some advice please. I'm w and w for just over 2 years now. No ...

Cindy1462

•7 years ago

11 Replies

idealisib/treatment

I have taken idealisib for the past 2 years. I had excellent results. Almost normal blood counts. Unfortunately I suffer from diarrhoea. Anybody had same...

I have taken idealisib for the past 2 years. I had excellent results. Almost nor...

eggemma

•7 years ago

7 Replies

feeling cold when its hot

Hi there I have had CLL for 10 years now don't' need to have a treatment just yet but I need an answer to a question is it normal to feel cold and hot all the...

Hi there I have had CLL for 10 years now don't' need to have a treatment just ye...

ilkay

•7 years ago

11 Replies

Ed Victor, legendary literary agent, who died last week, had CLL

Ed Victor, legendary literary agent, died June 7th, age 77 of a heart attack . He had CLL, diagnosed at age 60. Here is a piece from Daily Mail 2010...

Ed Victor, legendary literary agent, died June 7th, age 77 of a heart attack . H...

romarin

•7 years ago

4 Replies

Another week's delay

My other half started FCR 7 weeks ago, first course went without hiccup. Platelet levels initially spiked, but now steadily dropping (82 before treatment,...

My other half started FCR 7 weeks ago, first course went without hiccup. Platel...

shoppingtrolley

•7 years ago

2 Replies

Medicinal Cannabis

Any thoughts or experience of medicinal cannabis with CLL?

MilliePerth

•7 years ago

1 Reply

Can Yogurt Fight Antibiotic Resistance? Lactobacillus isolate inhibits multi-drug resistant bacteria

Researchers here may have found an unlikely ally in their fight against antibiotic-resistant pathogens -- commercial yogurt...

Researchers here may have found an unlikely ally in their fight against antibiot...

AussieNeil

Administrator•7 years ago

10 Replies

ASH 2016: Dr. Seymour on Combination therapies with venetoclax

Hi, I am a big believer in combination therapies for CLL. This week I'm posting an interview on our nonprofit’s website http://cllsociety.org with Dr. John...

Hi, I am a big believer in combination therapies for CLL. This week I'm posting ...

bkoffman

CLL CURE Hero•7 years ago

5 Replies

Tooth decay

I will get my third infusion of Rituxan and bendamustine next week. Went to the dentist yesterday for a clean and a checkup. He found five cavities! My teeth...

I will get my third infusion of Rituxan and bendamustine next week. Went to the ...

Rhetler

•7 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2017

Post FCR

Health Check: what’s the right way to blow your nose?

Reassessment of Anti-CD20 Therapy in Lymphoid Malignancies: Impact, Limitations, and New Directions (Rituximab, Ofatumumab and Obinutuzumab)

Anyone 13 del Igvh mutated on Ibrutinib

Belly button pain on ibrutinib

Hair dye on ibrutinib?

I have enjoy reading this site for a while, this is first post. Anyone have experience with Alpha Lipoic Acid?

Possible consequences of CLL for your body

Allergic Reaction

Free CLL Educational Webinar about Lab Tests

Feinstein Institute Scientist Recognized for Innovative CLL Research

Unsure and a little nervous

Not sure what to say

AlC drops

Being on ibrutinib for 3 and a half months and had a pathological femur neck fracture. Biopsy indicated CLL infiltration on bone.

Glad I found this group

Richters transformation

CLL in the Central Nervous System: Any Experience with Cytarabine (Cytosar)?

HealthUnlocked iOS app released for iPhone worldwide today

Magnetic bracelets

Peripheral Neuropathy

Peripheral Neuropathy

idealisib/treatment

feeling cold when its hot

Ed Victor, legendary literary agent, who died last week, had CLL

Another week's delay

Medicinal Cannabis

Can Yogurt Fight Antibiotic Resistance? Lactobacillus isolate inhibits multi-drug resistant bacteria

ASH 2016: Dr. Seymour on Combination therapies with venetoclax

Tooth decay

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