Posts - CLL Support | HealthUnlocked

CLL Support

22,468 members • 38,605 posts

All posts for May 2018

Manuka Honey

Hi has anyone taken anything particularly Manuka honey to help with low neutrophil ??? Or any ideas as how to get levels up as it’s delaying 2nd round FCR for...

Hi has anyone taken anything particularly Manuka honey to help with low neutroph...

Sailormoon11

•6 years ago

19 Replies

Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)

In case you need any more persuasion that we are in exiting times for the future of CLL, read this article about the exciting results of a drug which all being...

In case you need any more persuasion that we are in exiting times for the future...

AdrianUK

•6 years ago

19 Replies

15 Tips to Cope with Scanxiety (Scan Anxiety) https://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/

https://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/ Scanxiety Scanxiety is the term coined for the pre-test and post-test fear that many patients...

https://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/ Scanxiety Scanxiet...

lankisterguy

Volunteer•6 years ago

2 Replies

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? Benefits or not of taking Aspirin Extra

Hi I wanted to speak about taking Aspirin Extra, now I went through a period of getting headaches during the night as I have been gritting my teeth in the...

Hi I wanted to speak about taking Aspirin Extra, now I went through a period of...

jangregg

•6 years ago

3 Replies

Mouth Ulcers after Chemo

I have seen posts in the past about treatments for mouth ulcers after chemo treatments. Does anybody recall the where I might find relevant posts and...

I have seen posts in the past about treatments for mouth ulcers after chemo trea...

Joffre1

•6 years ago

3 Replies

Up at 7 AM, but not quite; then it's noon?!?!

Coincidentally with my weekly exercise reduced from 7 days lite, 3 days vigorous to 5 days lite & 0-1 vigorous, my sleep habits have noticeably changed this...

Coincidentally with my weekly exercise reduced from 7 days lite, 3 days vigorous...

gemit2000

•6 years ago

14 Replies

New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib

Yesterday I started a new clinical trial at UCSD for people that have relapsed on Ibrutinib. I had been a part of the RESONATE trial and have been on...

Yesterday I started a new clinical trial at UCSD for people that have relapsed o...

Teegolf47

•6 years ago

18 Replies

new law for terminally ill

Trump just signed a law giving terminally ill patients access to experimental drugs ! Isn't that great ?

Trump just signed a law giving terminally ill patients access to experimental dr...

ikahan

•6 years ago

27 Replies

Gazyva (obinutuzumab) treatment

My Doctor is recommending Gazyva (obinutuzumab) treatment for my CLL. I heard that some people had good outcomes. How long would one expect to be Cancer free...

My Doctor is recommending Gazyva (obinutuzumab) treatment for my CLL. I heard th...

WinJ3

•6 years ago

43 Replies

Will we be able to manufacture CART cells inside our own bodies?

We truly live in exciting times for the potential future treatment of CLL. In the latest podcast from The Hematologist, Drs. Caron Jacobson and Marcela Maus...

We truly live in exciting times for the potential future treatment of CLL. In ...

AdrianUK

•6 years ago

Be the first to reply

NHSE and NICE Ibrutinib update

Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the...

Sean O'Neill, Chief Reporter from The Times who broke the story about the failur...

Jm954

Administrator•6 years ago

8 Replies

Worried that Ibrutinib is working?

My husband has been on Ibrutinib for 2 months....and his neutrophils dropped from 2.3 to 1.3 and now developed a mouth sore. His lymphocytes are sky high at...

My husband has been on Ibrutinib for 2 months....and his neutrophils dropped fro...

kathymac52

•6 years ago

13 Replies

The bugs we carry and how our immune system fights them

'Human beings are large, complex, multicellular, multi-organ systems. We reproduce slowly and rely on a breadth of mechanisms that allow us to control the...

'Human beings are large, complex, multicellular, multi-organ systems. We reprodu...

AussieNeil

Administrator•6 years ago

2 Replies

Biotin while on Ibrutinib and rituximab.

Hi just wondering if anyone on Ibrutinib and rituximab is using increased doses of biotin to help with brittle nails and dry skin? I have just seen my...

Hi just wondering if anyone on Ibrutinib and rituximab is using increased doses ...

annmcgowan

•6 years ago

31 Replies

International Prognostic Index Calculator

ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an...

ALERT: avoid this post if you are the kind of person who does not want to know a...

AdrianUK

•6 years ago

48 Replies

what happens after treatment of CLL ?

After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly...

After treatment of CLL through FCR and getting into remission hopefully, how wil...

Nour80Leen2011

•6 years ago

21 Replies

ESA

I have now had to stop working and have been advised to claim contribution base ESA ( this is a benefit in the U.K.) has anyone else had any experience of...

I have now had to stop working and have been advised to claim contribution base ...

dandelup

•6 years ago

13 Replies

Reactive Lymphocyte

Hi, in my last WBC, I have seen reactive lymphocytes (8%),does anyone know the cause? Ava

Hi, in my last WBC, I have seen reactive lymphocytes (8%),does anyone know the c...

ava1967ir

•6 years ago

5 Replies

Remote village to metropolis: how globalisation spreads infectious diseases

'These days we can get from most remote villages anywhere to home in 36 hours. And migrating humans can certainly carry microbial “passengers”. This means...

'These days we can get from most remote villages anywhere to home in 36 hours. A...

AussieNeil

Administrator•6 years ago

Be the first to reply

CLL treatment and hair loss

Hi everyone I am about to start treatment for CLL soon and most probably the treatment will be FCR meaning a mix of chemotherapy, are am I going to lose my...

Hi everyone I am about to start treatment for CLL soon and most probably the tre...

Nour80Leen2011

•6 years ago

12 Replies

Science or Snake Oil: what is black salve (blood root) and why do people think it can cure cancer (in particular skin cancer)

Black Salve (colloquially as “blood root”, “Indian paint” and “red root”.) 'appears under a variety of trade names including Cansema (Alpha Omega Labs),...

Black Salve (colloquially as “blood root”, “Indian paint” and “red root”.) 'appe...

AussieNeil

Administrator•6 years ago

5 Replies

Combination therapy with Ibrutinib and Venetoclax?

Does anyone know if you can get the combination of Ibrutinib and Venetoclax without being in a trial? We live in the US ( Wisconsin). I am reading that the two...

Does anyone know if you can get the combination of Ibrutinib and Venetoclax with...

kathymac52

•6 years ago

27 Replies

Heartburn

Nearing two years on Imbruvica ( no real problems) but recently I've been experiencing an almost heartburn like pain with my first bite of almost anything. It...

Nearing two years on Imbruvica ( no real problems) but recently I've been experi...

RJR1

•6 years ago

6 Replies

Care Giver Support Group

As previously reported I was first diagnosed with CLL 6 years ago...had Chemo 3 years ago and was in remission up until March of this year. Started Imbruvica...

As previously reported I was first diagnosed with CLL 6 years ago...had Chemo 3 ...

Audrey10

•6 years ago

9 Replies

Round 2...

After three months of remission, my local oncologist believes CLL is back but wants to wait until I've seen the specialist before selecting a treatment plan....

After three months of remission, my local oncologist believes CLL is back but wa...

Smedley54

•6 years ago

16 Replies

CLL and Sjogren's

Hello. I'm 54 and was diagnosed with CLL 6 years ago, currently under W&W. In the past six months I have been experiencing "new" symptoms that seem similar to...

Hello. I'm 54 and was diagnosed with CLL 6 years ago, currently under W&W. In th...

Lapo

•6 years ago

35 Replies

High Ferritin levels

My rheumatologist is tracking my serum ferritin levels. Have in the past also my sedimentation rate. A blood test years ago resulted in a result of 5000 for...

My rheumatologist is tracking my serum ferritin levels. Have in the past also my...

Njsailorgirl

•6 years ago

5 Replies

Newly diagnosed with CLL

Hi everyone, I am 47 years old I was diagnosed last April will CLL my WBC is around 60,000 with few swollen lymph nodes and slight enlargement in spleen, but I...

Hi everyone, I am 47 years old I was diagnosed last April will CLL my WBC is aro...

Nour80Leen2011

•6 years ago

37 Replies

Can I stop medication?

If I were to start taking Ibrutinib, or Dasatinib, xxxtinib... say for 6 months, and I decided to stop (arbitrarily decided) ... would I have made myself...

If I were to start taking Ibrutinib, or Dasatinib, xxxtinib... say for 6 months,...

tedrog

•6 years ago

9 Replies

Cold

Hi guys I think I’m taking a cold or something how can I help to try and save giving this to my husband who’s having FCR treatment ???

Hi guys I think I’m taking a cold or something how can I help to try and save gi...

Sailormoon11

•6 years ago

11 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

Manuka Honey

Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)

15 Tips to Cope with Scanxiety (Scan Anxiety) https://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/

? Benefits or not of taking Aspirin Extra

Mouth Ulcers after Chemo

Up at 7 AM, but not quite; then it's noon?!?!

New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib

new law for terminally ill

Gazyva (obinutuzumab) treatment

Will we be able to manufacture CART cells inside our own bodies?

NHSE and NICE Ibrutinib update

Worried that Ibrutinib is working?

The bugs we carry and how our immune system fights them

Biotin while on Ibrutinib and rituximab.

International Prognostic Index Calculator

what happens after treatment of CLL ?

ESA

Reactive Lymphocyte

Remote village to metropolis: how globalisation spreads infectious diseases

CLL treatment and hair loss

Science or Snake Oil: what is black salve (blood root) and why do people think it can cure cancer (in particular skin cancer)

Combination therapy with Ibrutinib and Venetoclax?

Heartburn

Care Giver Support Group

Round 2...

CLL and Sjogren's

High Ferritin levels

Newly diagnosed with CLL

Can I stop medication?

Cold

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Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

Manuka Honey

Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)

15 Tips to Cope with Scanxiety (Scan Anxiety) https://medivizor.com/blog/2014/06/03/15-tips-cope-scanxiety/

? Benefits or not of taking Aspirin Extra

Mouth Ulcers after Chemo

Up at 7 AM, but not quite; then it's noon?!?!

New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib

new law for terminally ill

Gazyva (obinutuzumab) treatment

Will we be able to manufacture CART cells inside our own bodies?

** NHSE and NICE Ibrutinib update **

Worried that Ibrutinib is working?

The bugs we carry and how our immune system fights them

Biotin while on Ibrutinib and rituximab.

International Prognostic Index Calculator

what happens after treatment of CLL ?

ESA

Reactive Lymphocyte

Remote village to metropolis: how globalisation spreads infectious diseases

CLL treatment and hair loss

Science or Snake Oil: what is black salve (blood root) and why do people think it can cure cancer (in particular skin cancer)

Combination therapy with Ibrutinib and Venetoclax?

Heartburn

Care Giver Support Group

Round 2...

CLL and Sjogren's

High Ferritin levels

Newly diagnosed with CLL

Can I stop medication?

Cold

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

NHSE and NICE Ibrutinib update