Posts - CLL Support | HealthUnlocked

CLL Support

22,641 members • 38,864 posts

All posts for May 2018

CLL... Just tired of it all..

So if our CLL will always be here and most are in W&W why even bother to continue running back and forth to the doctor? I guess I'm frustrated. I can't get the...

So if our CLL will always be here and most are in W&W why even bother to continu...

Mamawof25

•6 years ago

45 Replies

Soar Joints and back

Next week I will be finishing my treatment of Leukeran and Gazyva. I have been experimenting soar joints and quite severe lumbalgia Has anybody any...

Next week I will be finishing my treatment of Leukeran and Gazyva. I have been ...

CAGIULIANO

•6 years ago

6 Replies

Ibrutinib and A F

I stopped my medication seven days before my second Hip operation when my bloods were all normal. I have been on Ibrutinib for seven years with now complete...

I stopped my medication seven days before my second Hip operation when my bloods...

Berrytog

•6 years ago

7 Replies

Want to take advantage of all our features? Just log in!

Lessons from five years of ibrutinib experience

This is a link to a paper that was released online a couple of months ago. I thought I’d take the opportunity to highlight some things from it and point out...

This is a link to a paper that was released online a couple of months ago. I tho...

AdrianUK

•6 years ago

5 Replies

CLLSA Response to NHS England Failing to Fund Ibrutinib in line with NICE Guidance

Many of you will have seen the articles in The Times this weekend which have revealed an issue of immense importance to people living with Chronic Lymphocytic...

Many of you will have seen the articles in The Times this weekend which have rev...

Jm954

Administrator•6 years ago

62 Replies

Treatment timeline

Husband's haemoglobin has dropped to 10.9 and platelet count is at 68,000. He is otherwise completely fine. The doctor has recommended immediate treatment. But...

Husband's haemoglobin has dropped to 10.9 and platelet count is at 68,000. He is...

AstraP

•6 years ago

11 Replies

CLL

Swollen lymph glands in neck - I have one that is painful - is this normal with CLL? I am newly diagnosed.

Swollen lymph glands in neck - I have one that is painful - is this normal with ...

Jon123athan

•6 years ago

5 Replies

It contains more than 4,000 chemicals and has spread into every human body on Earth.

Among it components are formaldehyde, acetone, ethanol, ketone bodies, dihydrogen monoxide, tryptophan, urea, Dehydroepiandrosterone, Hexosephophosphate P and...

Among it components are formaldehyde, acetone, ethanol, ketone bodies, dihydroge...

lankisterguy

Volunteer•6 years ago

4 Replies

Dairy diet and Cll

Are people that are watch and wait do you stick to primarily a veggie diet ? Do yuh drink or Consume any dairy products ? Or just almond milk My Father is...

Are people that are watch and wait do you stick to primarily a veggie diet ? Do ...

Canuck901

•6 years ago

5 Replies

Need help with medicine

I've been taking IMBRUVICA for over 2 months for my CLL and its not working should I keep taking it?

I've been taking IMBRUVICA for over 2 months for my CLL and its not working shou...

allenmannello

•6 years ago

15 Replies

Newly Diagnosed

What does my WBC mean if it says 12.4x 10 does that mean 120 compared to what it shows normal range 4.8 / 10.8

What does my WBC mean if it says 12.4x 10 does that mean 120 compared to what it...

Cabininthewoods

•6 years ago

6 Replies

Green Tea and diet changes

I’ve seen different reports on using a green tea supplement. Have any of you done that and what have your results been with it? Also have you made any...

I’ve seen different reports on using a green tea supplement. Have any of you do...

Jhoover1014

•6 years ago

12 Replies

Concerning blood results

Hi was wanting some support and advice from everyone on here. My blood platelets are elevated, my mean cell volume is down. After looking at blood under the...

Hi was wanting some support and advice from everyone on here. My blood platelets...

Hanneesweedie

•6 years ago

6 Replies

Happy Mother's Day

I want to wish all of our Mother's a very Happy Mother's Day. Hoping you have a wonderful day with family and friends. Carole

I want to wish all of our Mother's a very Happy Mother's Day. Hoping you have a...

ladyprescott

•6 years ago

4 Replies

Everything you need to know

https://hemonc.org/wiki/Chronic_lymphocytic_leukemia_(CLL/SLL) https://hemonc.org/wiki/Main_Page A Free Hematology/Oncology Reference

https://hemonc.org/wiki/Chronic_lymphocytic_leukemia_(CLL/SLL) https://hemonc.o...

Hidden

•6 years ago

4 Replies

need to change email address

I need to change my email address. See Admin advice below.

susanengel

•6 years ago

1 Reply

Stages and symptoms

The one thing I am finding with this site is that no one ever states what stage they are in. 1, 2, 3 or 4. They only talk about their symptoms. That's good,...

The one thing I am finding with this site is that no one ever states what stage ...

altheriot

•6 years ago

24 Replies

Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....

The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving...

The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the f...

romarin

•6 years ago

12 Replies

Article in The Times re CLL on May 11th

Can anyone copy and paste this article please. Paywall blocks it. Thanks!

romarin

•6 years ago

1 Reply

NHS decision takes away Ibrutinib from patients

A disturbing article in today's Times newspaper says that the NHS has withdrawn Ibrutinib for some CLL patients. The patients affected are some 200 a year who...

A disturbing article in today's Times newspaper says that the NHS has withdrawn ...

carnvellan

•6 years ago

60 Replies

Just diagnosed

Just received my diagnosis today of CLL. So glad I found this group. Now the future doesn’t look so grim.

Just received my diagnosis today of CLL. So glad I found this group. Now the f...

Jhoover1014

•6 years ago

26 Replies

Eight years remission

Visit to my CLL specialist today. Blood test results show no deterioration. Happy Days!

Visit to my CLL specialist today. Blood test results show no deterioration. Happ...

hammyj

•6 years ago

33 Replies

Kenya with cll watch and wait

Hi my husband was diagnosed with call in January this year. No real symptoms it was discovered as a result of blood tests for a toe infection !!!! We really...

Hi my husband was diagnosed with call in January this year. No real symptoms it...

Wombat63

•6 years ago

15 Replies

Confused New to this ,

No Sickness or Pain or passing gas ,but stomach rumbles after food

THOMASJ

•6 years ago

2 Replies

Ceflex and Imbruvica

Hi all, Has anybody taken an antibiotic while on Imbruvica? I’ve been on imbruvica for 10 days, and so far I’m doing fine, but a a small growth (like a...

Hi all, Has anybody taken an antibiotic while on Imbruvica? I’ve been on imbruv...

Roni74

•6 years ago

22 Replies

Dry mouth

Does this give dry mouth

Granpa1234

•6 years ago

3 Replies

ARQ 531 trial

Hi all, I’ve been on the full dosage of Venetoclax since July, but it’s stopped working, so now I’ll be doing a clinical trial if ARQ-531. Is anyone here in...

Hi all, I’ve been on the full dosage of Venetoclax since July, but it’s stopped ...

MelindaBates

•6 years ago

5 Replies

Who can you thank this week?

I’ve noticed that having cll is like a battle for me mentally. One of the main fronts of that battle is the fight for gratitude. When I’m struggling about the...

I’ve noticed that having cll is like a battle for me mentally. One of the main f...

AdrianUK

•6 years ago

8 Replies

Has anyone with CLL experienced difficulties after cataract surgery?

I had the surgery over two months ago and am still experiencing inflammation that is causing blurred vision. My opthamologist is beginning to think that my...

I had the surgery over two months ago and am still experiencing inflammation tha...

Ngtinfu

•6 years ago

20 Replies

New York City CLL Support Group May 20 @ 3:00 pm - 6:00 pm

New York City CLL Support Group May 20 @ 3:00 pm - 6:00 pm This “Special Session with Dr. Richard Furman” will replace our regularly scheduled April and May...

New York City CLL Support Group May 20 @ 3:00 pm - 6:00 pm This “Special Sessio...

lankisterguy

Volunteer•6 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

CLL... Just tired of it all..

Soar Joints and back

Ibrutinib and A F

Lessons from five years of ibrutinib experience

CLLSA Response to NHS England Failing to Fund Ibrutinib in line with NICE Guidance

Treatment timeline

CLL

It contains more than 4,000 chemicals and has spread into every human body on Earth.

Dairy diet and Cll

Need help with medicine

Newly Diagnosed

Green Tea and diet changes

Concerning blood results

Happy Mother's Day

Everything you need to know

need to change email address

Stages and symptoms

Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....

Article in The Times re CLL on May 11th

NHS decision takes away Ibrutinib from patients

Just diagnosed

Eight years remission

Kenya with cll watch and wait

Confused New to this ,

Ceflex and Imbruvica

Dry mouth

ARQ 531 trial

Who can you thank this week?

Has anyone with CLL experienced difficulties after cataract surgery?

New York City CLL Support Group May 20 @ 3:00 pm - 6:00 pm

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive