Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for January 2019

CoQ10 Benefits?

Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the...

Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking C...

Elam

•6 years ago

6 Replies

Usa extra cold snap

I last asked what problems the heat in Australia caused for CLL Now the other extreme we read about record low temperatures around Chicago If we have any...

I last asked what problems the heat in Australia caused for CLL Now the other ex...

Jsk1950

•6 years ago

2 Replies

Cutting Imbruvica dosage

With a two month supply of 420 mg Imbruvica on hand, my dose has been cut in half due to side effects. Is it advisable to cut the available tablets in half?

With a two month supply of 420 mg Imbruvica on hand, my dose has been cut in hal...

Survivor1951

•6 years ago

14 Replies

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CLL chemo more than 10 days fever!

Hello! I have CLL and had my first FCR chemo except not Rituximab but Ofatumumab. Everything went well but since 10 days I have extreme high fever 39,9-40...

Hello! I have CLL and had my first FCR chemo except not Rituximab but Ofatumumab...

Eriksan2

•6 years ago

15 Replies

Clinical trials

Hi, As many of you know, I am alive today because of my entering two phase I clinical trials, one for PCI-32765 that later became known as ibrutinib and...

Hi, As many of you know, I am alive today because of my entering two phase I cli...

bkoffman

CLL CURE Hero•6 years ago

4 Replies

Lymph node biopsy to rule out Richtors

So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS. They will biopsy the largest node. It’s 5 cm....

So I got the shock of my life. My hematologist wants to have me undergo a fine n...

Lola69

•6 years ago

130 Replies

CLL Society Alert (newsletter for USA patients)- Video Interviews with Dr. Furman, Dr. Koffman- Educational Forums & Support Groups - USA

To read the full details with live HTML links go here: https://cllsociety.org/2019/01/january-29-2019/ or here:...

To read the full details with live HTML links go here: https://cllsociety.org/2...

lankisterguy

Volunteer•6 years ago

1 Reply

Treatment necessary?

I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6...

I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CV...

MyCLLJourney

•6 years ago

17 Replies

Venetoclax side effects

I've been on Venetoclax for 2 months. Have been getting blister-like skin eruptions on my feet and lower legs that are painful to the touch and show swelling...

I've been on Venetoclax for 2 months. Have been getting blister-like skin erupt...

kudoc

•6 years ago

5 Replies

36 years old with CLL - Show must go on!

Hi Guys, I am writing from Hungary. I am 36 and have diagnosed CLL two weeks ago after a general work aptitude health test. At this moment I just have FLOW...

Hi Guys, I am writing from Hungary. I am 36 and have diagnosed CLL two weeks ag...

tomster

•6 years ago

19 Replies

Anyone out there with this combination!

I've had CLL for 6 years and been on Ibrutinib successfully for 3. However I was diagnosed with Liomyosarcoma in December last year and am currently being...

I've had CLL for 6 years and been on Ibrutinib successfully for 3. However I was...

newrider

•6 years ago

5 Replies

Imbruvica with Hep B

Three years ago when I was diagnosed with Non Hodgkin Lymphoma the first doctor went out of his way to protect my liver. In 1982, 35 years ago I had a full...

Three years ago when I was diagnosed with Non Hodgkin Lymphoma the first doctor ...

PAgrandmom

•6 years ago

4 Replies

Going to different hospitals

My mum diagnosed 2012 bloods ok but has symptoms went via GP for scan on stomach now referred to different hospital for other investigations - should this not...

My mum diagnosed 2012 bloods ok but has symptoms went via GP for scan on stomach...

Dazt

•6 years ago

1 Reply

UPDATE ON MY CONDITION

admitted to the hospital for severe lower back pain and swelling of my lower legs...the tumor in my abdominal wall had grown from a golf ball to the size of a...

admitted to the hospital for severe lower back pain and swelling of my lower leg...

tlcladygiraffe

•6 years ago

14 Replies

Influenza Vaccination Safety During Hospitalization

With some of us understandably concerned about the safety of flu vaccinations, this study of over a quarter of a million people vaccinated during a hospital...

With some of us understandably concerned about the safety of flu vaccinations, t...

AussieNeil

Administrator•6 years ago

8 Replies

Anxiety, Loss, and Happiness

I’m writing to apologise for not appearing much on the CLL Support HU for that past 6 months or so and to kindly ask for any advice you can offer. Somebody...

I’m writing to apologise for not appearing much on the CLL Support HU for that p...

Ernest2

•6 years ago

26 Replies

Ibrutinib as a frontline treatment for nearly 3 months. Have just gotten over acute back pain but now have pain in left ankle. Any advice?

Ankle swollen.

SkiStMoritz

•6 years ago

6 Replies

How to search for relevant posts?

Hi there! I am wondering how to search for posts on particular topics. Anyone? Thanks! Heather

Hi there! I am wondering how to search for posts on particular topics. Anyone?...

hsouter

•6 years ago

4 Replies

Help

Hi, I have some question I wonder if someone could help me? Basically for the past 2 years my mum has been visiting the haematologist every 3 months, on her...

Hi, I have some question I wonder if someone could help me? Basically for the pa...

HSon

•6 years ago

7 Replies

Spleen enlarged

In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told...

In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about...

Tross88

•6 years ago

6 Replies

Stroke

My wife had a stroke. She has come out of it good but there are some behavioural shortcomings. How do I deal with it?

My wife had a stroke. She has come out of it good but there are some behavioural...

Latanoprost1

•6 years ago

1 Reply

Living and dying in 3/4 time.

I live in Durham, NC, USA.CLL Stage 1. W&W Joint pain. Fatigue. Treated at Duke Cancer Institute. First diagnosed 2-6-18. I have started Yoga for joint pain,...

I live in Durham, NC, USA.CLL Stage 1. W&W Joint pain. Fatigue. Treated at Duke ...

DUKELAXDAD

•6 years ago

16 Replies

On Ibrutinib w/microscopic urinary bleeding -- and normal platelet count. So wondering?

My platelets are normal, but recently microscopic urinary bleeding was discovered through repeated lab tests. I've been on Ibrutinib for almost a year, and...

My platelets are normal, but recently microscopic urinary bleeding was discovere...

suz02

•6 years ago

20 Replies

Wbc fluctuation

Dear CLL friends, last Monday I had appointment at my haematologist and did a blood test and the level of my Wbc was reduced from 28000 to 18000. Is it just a...

Dear CLL friends, last Monday I had appointment at my haematologist and did a bl...

Lela1212

•6 years ago

6 Replies

Not much energy

I've had CLL for almost 10 years on watch and wait. I had low energy for a couple of years before I was diagnosed, but it has become much worse over the last 2...

I've had CLL for almost 10 years on watch and wait. I had low energy for a coupl...

Notmuchenergy

•6 years ago

18 Replies

Morning After First BR

-Restful 6 hour sleep (no meds to sleep required). -BP and temp normal -no nausea or vomiting no meds required -hungry as a bear One more session of B later...

-Restful 6 hour sleep (no meds to sleep required). -BP and temp normal -no naus...

Estate1

•6 years ago

19 Replies

Bumps under skin and warts

tiny bumps and also warts growing everywhere... any solutions?... dermatoligist just froze warts, but they come back... but I feel tiny bumps under chest and...

tiny bumps and also warts growing everywhere... any solutions?... dermatoligist ...

Butitisme

•6 years ago

1 Reply

Time to start treatment?

In W&W for about 18 months. My WBC has risen to about 115 but I have no significant symptoms. Most of my counts are not bad and some are improved (rbc up)...

In W&W for about 18 months. My WBC has risen to about 115 but I have no signifi...

Elam

•6 years ago

14 Replies

CLL spreading to lungs?

Hi, My name is Susie & I’m 53 years old. I had aggressive chemo in ‘13 because I was in so much pain & it really helped me. I have been sick with bronchitis...

Hi, My name is Susie & I’m 53 years old. I had aggressive chemo in ‘13 because I...

Suzimac77

•6 years ago

6 Replies

leukeran side effect

i was given a treatement of leukeran 2 doses now on my second dose 2 days later mu lips are peeling , is this bad ?

i was given a treatement of leukeran 2 doses now on my second dose 2 days later ...

dannydann

•6 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2019

CoQ10 Benefits?

Usa extra cold snap

Cutting Imbruvica dosage

CLL chemo more than 10 days fever!

Clinical trials

Lymph node biopsy to rule out Richtors

CLL Society Alert (newsletter for USA patients)- Video Interviews with Dr. Furman, Dr. Koffman- Educational Forums & Support Groups - USA

Treatment necessary?

Venetoclax side effects

36 years old with CLL - Show must go on!

Anyone out there with this combination!

Imbruvica with Hep B

Going to different hospitals

UPDATE ON MY CONDITION

Influenza Vaccination Safety During Hospitalization

Anxiety, Loss, and Happiness

Ibrutinib as a frontline treatment for nearly 3 months. Have just gotten over acute back pain but now have pain in left ankle. Any advice?

How to search for relevant posts?

Help

Spleen enlarged

Stroke

Living and dying in 3/4 time.

On Ibrutinib w/microscopic urinary bleeding -- and normal platelet count. So wondering?

Wbc fluctuation

Not much energy

Morning After First BR

Bumps under skin and warts

Time to start treatment?

CLL spreading to lungs?

leukeran side effect

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