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CLL Support

23,253 members•39,948 posts

All posts for May 2017

one year off Ibrutinib. Still well....

Just had 4 month check up and I remain well almost a year after abandoning Ibrutinib due to painful side effects. (See previous posts) My WBC is 16.23....

Just had 4 month check up and I remain well almost a year after abandoning Ibrut...

romarin

•7 years ago

13 Replies

Treatment choices and work or not to work

Hello again. When I returned to the hospital again on Monday the doctors are now urging me to begin treatment fairly soon. My WBC doubled from 68 in April 2016...

Hello again. When I returned to the hospital again on Monday the doctors are now...

Eebie1234

•7 years ago

19 Replies

Ibrutinib withdrawal symptoms

I was on ibrutinib for 3 years. Other than a few side effects at the beginning, such as hair loss, joint pain, eeak nails, I successfully took 4 pills a day....

I was on ibrutinib for 3 years. Other than a few side effects at the beginning, ...

Jewelj76

•7 years ago

4 Replies

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Reducing Imbruvica Dose

Been on 420 mg daily for almost a year. All numbers are good according to my oncologist. Here's my question... has anyone gone to acteduced dose after improved...

Been on 420 mg daily for almost a year. All numbers are good according to my onc...

RJR1

•7 years ago

20 Replies

Thank you Clive James

Not many cancers have wonderful poets to capture in words what it means to have life saving novel drugs available! Clive James's poem in praise of Ibrutinib...

Not many cancers have wonderful poets to capture in words what it means to have ...

KateEvaLen

•7 years ago

6 Replies

SO, SO TIRED

OMG - I can't even spend 10 minutes pulling weeds from my flower beds, without feeling exhausted. I'm too tired to even sit down and cry. Any words of wisdom,...

OMG - I can't even spend 10 minutes pulling weeds from my flower beds, without f...

duffymcgrif

•7 years ago

18 Replies

Neutrophils

Hi just a quick update. Had blood test yesterday and got call from hospital straight after to start 4 day GC-SF injection as my neutrophils are 0.3. I'm...

Hi just a quick update. Had blood test yesterday and got call from hospital str...

sallyplest

•7 years ago

7 Replies

Hiccups: Day Five

I developed hiccups after an infusion of bendamustine and ritiximab, using dexamethesone as an anti nausea drug. Turns out the the dex can cause hiccups. I am...

I developed hiccups after an infusion of bendamustine and ritiximab, using dexam...

Rhetler

•7 years ago

4 Replies

Question: Has anyone have a bloating feeling on Venetoclax ?

I am on both Imbruvica and full Venetoclax now. I on my 5th cycle of the clinical trial. Over all I have been pretty good. My numbers have rapidly gone to...

I am on both Imbruvica and full Venetoclax now. I on my 5th cycle of the clinic...

Hoffy

•7 years ago

9 Replies

Ibrutinib and PACs and A-Fib

I will be on Ibrutinib 2 years in July. I went to the ER the other day for Atrial Flutter in my chest. I've been having it for about a month and it got worse...

I will be on Ibrutinib 2 years in July. I went to the ER the other day for Atria...

-buster-brown-

•7 years ago

4 Replies

Looking for information

I'm new and just got my genetic test results back. It looks like I'm stage 0 with WBC of 25 and platelets at 173. My ALT is 14 and lymphocytes are at 54%. The...

I'm new and just got my genetic test results back. It looks like I'm stage 0 wit...

Molly2017

•7 years ago

4 Replies

CLL and erratic blood pressure and pulse

Is anyone aware of a connection that could explain a sudden onset of erratic heart rate during pneumonia which began 3 weeks ago (34-215bpm) and blood pressure...

Is anyone aware of a connection that could explain a sudden onset of erratic hea...

AdrianUK

•7 years ago

9 Replies

SEVERE HEAT INTOLERANCE, ANYONE ELSE?

Hi Everyone. I asked this question in my CLL online support group and the response was astounding!! I thought I was crazy, I Thought I was losing my...

Hi Everyone. I asked this question in my CLL online support group and the respo...

Joannh70

•7 years ago

84 Replies

Confused

Hi everyone, This is my first post here. I survived a two month coma & 3month stay in ICU. Influenza A, Strep A, Double pneumonia, severe ARDS, MOF ( including...

Hi everyone, This is my first post here. I survived a two month coma & 3month st...

Sepsur

•7 years ago

13 Replies

Celebrating Five Years on PCI-32765, better know these days as Ibrutinib

Hi, I was home from Ireland for about three days before I had to hit the road again this time to Manhattan where I've just returned from the International...

Hi, I was home from Ireland for about three days before I had to hit the road ag...

bkoffman

CLL CURE Hero•7 years ago

14 Replies

Update from IwCLL 2017

Hi all I'm just back from New York having done lots of interviews for VJHemonc.com. Have updated my blog with all the details but take home messages are that...

Hi all I'm just back from New York having done lots of interviews for VJHemonc....

Debinoz

•7 years ago

9 Replies

Stage 2 W&W - Joint and bone pain for 14 days now

On the 6th of May, I spent the day cleaning up my nicely wooded back yard after a long winter. I came in after a successful day of making my yard look awesome...

On the 6th of May, I spent the day cleaning up my nicely wooded back yard after ...

Paul_Mangold

•7 years ago

7 Replies

life insurance company definition regards CLL.

guys have only just joined this group I see many posts regards Life insurance companies and the limitation re six months terminal small print. This is born in...

guys have only just joined this group I see many posts regards Life insurance co...

Tonnross

•7 years ago

8 Replies

Medication

Medication is everyone on regarding psp I have been told by a neurologist that I would be better off without anybmedicatioon at all. As it was doing more...

Medication is everyone on regarding psp I have been told by a neurologist that...

Sgadan

•7 years ago

1 Reply

HIGH URIC ACID

Close to 2 months on Imbruvica. Now up to 196k. Blood count shows Uric acid up to 7.2. Taking Allopurinol 100 mg. Isn't this supposed to keep that acid...

Close to 2 months on Imbruvica. Now up to 196k. Blood count shows Uric acid up...

duffymcgrif

•7 years ago

10 Replies

Antibiotics

Hi just wondering if anyone has any thoughts on taking low dose prophylactic antibiotics for 18 months. recently I have undergone a second cystoscopy which...

Hi just wondering if anyone has any thoughts on taking low dose prophylactic an...

MrsB1963

•7 years ago

13 Replies

My Non-toxic Health Protocol (which has helped me)

Hi. I just joined this great forum yesterday. People are very generous with information. Thank you. I began developing my non-toxic health protocol in May...

Hi. I just joined this great forum yesterday. People are very generous with info...

PlanetaryKim

•7 years ago

17 Replies

Being diagnosed tomorrow

It looks highly likely I have CLL. I'm getting the results of immunotyping of my lymphocytosis tomorrow. The helpline isn't working. Anyone up for giving me...

It looks highly likely I have CLL. I'm getting the results of immunotyping of my...

AdrianUK

•7 years ago

10 Replies

Chicken Pox

Hi - I hope someone can help! I am currently relapsed with CLL looking at second line treatment in the next few months. I seem to remember that I am supposed...

Hi - I hope someone can help! I am currently relapsed with CLL looking at secon...

UKfulloflife

•7 years ago

7 Replies

Cll symptoms

Hello i have been diagnosed with cll. I was referred to a hematologist. I tried to explain my symptoms to him but he did not seem overly concerned and i am...

Hello i have been diagnosed with cll. I was referred to a hematologist. I tried...

Henny5

•7 years ago

14 Replies

CLL, benefits and Life insurance.

CLL, I seem to be in the same position as many regards being able to claim benefits re grey areas regards rules. Its a total mine field in general. Also I had...

CLL, I seem to be in the same position as many regards being able to claim benef...

Tonnross

•7 years ago

1 Reply

Low platelets and no taste - Venetoclax- Day 45

Mum has been out of hospital for a week and a half!! :) :) the minute she got out she felt a bit better, though incredibly weak and still needing a wheelchair....

Mum has been out of hospital for a week and a half!! :) :) the minute she got ou...

Natali

•7 years ago

3 Replies

Extreme fatigue and CLL

I am in the W&W phase, am not having anemia, but have been so fatigued it is hard to get through the day. Also extremely sensitive to heat. Is this unusual?

I am in the W&W phase, am not having anemia, but have been so fatigued it is har...

J-girl

•7 years ago

128 Replies

Stem cell breakthroughs bring unlimited supply of lab-made blood closer

'For the first time ever, blood-producing stem cells have been generated in a lab. Two separate teams of researchers have come up with differing...

'For the first time ever, blood-producing stem cells have been generated in a la...

AussieNeil

Administrator•7 years ago

2 Replies

Feeling strange?

Hi I am feeling so tired and just been on a cruise were I slept quite a lot! My tongue is tingling and feel like I can't take a full breath? I am seeing my...

Hi I am feeling so tired and just been on a cruise were I slept quite a lot! My ...

robertsw

•7 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2017

one year off Ibrutinib. Still well....

Treatment choices and work or not to work

Ibrutinib withdrawal symptoms

Reducing Imbruvica Dose

Thank you Clive James

SO, SO TIRED

Neutrophils

Hiccups: Day Five

Question: Has anyone have a bloating feeling on Venetoclax ?

Ibrutinib and PACs and A-Fib

Looking for information

CLL and erratic blood pressure and pulse

SEVERE HEAT INTOLERANCE, ANYONE ELSE?

Confused

Celebrating Five Years on PCI-32765, better know these days as Ibrutinib

Update from IwCLL 2017

Stage 2 W&W - Joint and bone pain for 14 days now

life insurance company definition regards CLL.

Medication

HIGH URIC ACID

Antibiotics

My Non-toxic Health Protocol (which has helped me)

Being diagnosed tomorrow

Chicken Pox

Cll symptoms

CLL, benefits and Life insurance.

Low platelets and no taste - Venetoclax- Day 45

Extreme fatigue and CLL

Stem cell breakthroughs bring unlimited supply of lab-made blood closer

Feeling strange?

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