Posts - CLL Support | HealthUnlocked

CLL Support

23,253 members•39,949 posts

All posts for March 2017

Explainer: what are blood groups and why do they matter?

With leukaemia, you may need blood transfusions when your bone marrow is no longer working effectively either due to leukaemia crowding your bone marrow or...

With leukaemia, you may need blood transfusions when your bone marrow is no long...

AussieNeil

Administrator•8 years ago

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WOW

And wow again The doctor was a young trainer with one of the older doctors observing. He has a beautiful manner and did a thorough check up, in fact I was in...

And wow again The doctor was a young trainer with one of the older doctors obser...

jan1780

•8 years ago

21 Replies

Would like CLL Specialist in BC - Private pay for IGHV?

Hi diagnosed Jan 2015 on w and w, numbers moving up but didn't double in the year I'm wondering if anyone knows a CLL Specialist in British Columbia Canada as...

Hi diagnosed Jan 2015 on w and w, numbers moving up but didn't double in the yea...

Jiggs17

•8 years ago

39 Replies

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High Altitude and CLL: Risk?

I have monitored your support group for a while now and appreciate all the shared information that can be found here. It has been very helpful over the last...

I have monitored your support group for a while now and appreciate all the share...

AGreenwoods

•8 years ago

18 Replies

Advice needed

I have been on watch and wait since my diagnosis in 2012 I was sent to see a heamotologist who advised blood tests every 6 months and was discharged due to my...

I have been on watch and wait since my diagnosis in 2012 I was sent to see a hea...

jan1780

•8 years ago

52 Replies

Switching from Ibrutinib to Venetoclax

For those who have made the switch, did you need to take a break from ibrutinib before starting the Venetoclax, or did you just make the transition without...

For those who have made the switch, did you need to take a break from ibrutinib...

Mcpill

•8 years ago

4 Replies

Top 3 ? - Questions for first visit to CLL specialist.

Hello everyone I do hope you have all had an 'easy' weekend ! I have a quick question .. And I mean that most sincerely because I know how generous you good...

Hello everyone I do hope you have all had an 'easy' weekend ! I have a quick qu...

Juliette02

•8 years ago

9 Replies

Members conference

Just registered to go to CLLSA Liverpool Members Conference 2017, May 9th, 2017 anyone else planning on going? It would be good to meet up with some of the...

Just registered to go to CLLSA Liverpool Members Conference 2017, May 9th, 2017 ...

Rebrin-UK

•8 years ago

8 Replies

1st week on venetoclax - WOW, not what we expected...

After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax. My husband just stared venetoclax 20mg we are on day 6 after...

After reviewing jtaeross's post from 3 months ago I wanted to share our experien...

NMMP

•8 years ago

31 Replies

Newly diagnosed, less than 6 mos

I am missing my rb1 gene , any thoughts, my wbc is 16 started out 12

Abroome

•8 years ago

1 Reply

CLL Treatment - Give your body a rest?

So Friends - an interesting question for long term CLLers. As this form of Cancer will never be the principle cause of our demise - should we consider putting...

So Friends - an interesting question for long term CLLers. As this form of Canc...

MartyR

•8 years ago

36 Replies

Slight fever in the evening with Ibrutinib

My father has been on Ibrutinib since July last year and has experienced positive improvement in his health with very little side effects. However, since mid...

My father has been on Ibrutinib since July last year and has experienced positiv...

yccymj

•8 years ago

7 Replies

Two New Challenges

I am quick NOT to blame anything on CLL, but I am not getting any real explanations. Within the last month I am waking up with new skin issues (looks like...

I am quick NOT to blame anything on CLL, but I am not getting any real explanati...

Paul_Mangold

•8 years ago

8 Replies

Experiences with complementary therapies?

Hello, I'm 63 and was diagnosed 12 years ago. I have been in the watchful waiting phase ever since, with WBCs and other counts in the normal range. I have,...

Hello, I'm 63 and was diagnosed 12 years ago. I have been in the watchful waitin...

Wordmonger

•8 years ago

39 Replies

Hearing loss and CLL

I woke up last Friday and found that overnight I went almost deaf in one year. I saw an ENT doc and he said it's probably nerve damage causing me to lose 90%...

I woke up last Friday and found that overnight I went almost deaf in one year. ...

ohiojim

•8 years ago

23 Replies

Hell no...

Thanks for all your kind messages. I was upset earlier today & it can sometimes take a few hours to get back up again... But back up I am - and I'm not going...

Thanks for all your kind messages. I was upset earlier today & it can sometimes ...

Hidden

•8 years ago

16 Replies

Venetoclax and the liver

Does venetoclax cause problems with the liver?

Corin850

•8 years ago

1 Reply

UTIs could soon be life-threatening without new antibiotics

For the first time, the World Health Organization has named which bacteria we most urgently need new antibiotics to fight, as they become increasingly...

For the first time, the World Health Organization has named which bacteria we mo...

AussieNeil

Administrator•8 years ago

1 Reply

Good luck all!

Hi guys I've decided that this isn't for me. I wish you all the best in the future and all the happiness that life can bring

Hi guys I've decided that this isn't for me. I wish you all the best in the futu...

Hidden

•8 years ago

5 Replies

Chemotherapy vs Ibrutinib for CLL Frontline Treatment - Dr Susan O'Brien. 12 to 24% of FCR patients effectively cured 6 years after FCR

Anyone interested in the pros and cons of chemotherapy vs non-chemotherapy treatment should watch this 10 minute video by Dr Susan O’Brien, MD, University of...

Anyone interested in the pros and cons of chemotherapy vs non-chemotherapy treat...

AussieNeil

Administrator•8 years ago

6 Replies

New to the group (not at all new to CLL!). Thought I'd say hello...

Hi everybody! I was diagnosed a few days after my 34th birthday in December 2002, although the first signs of the disease appeared some years earlier when I...

Hi everybody! I was diagnosed a few days after my 34th birthday in December 2002...

Hidden

•8 years ago

15 Replies

Secondary BR Treatment

After being diagnosed in Jan 2013 went through immediate FCR which lasted eight months. This led to a three year remission after which the disease was again...

After being diagnosed in Jan 2013 went through immediate FCR which lasted eight ...

plett1234

•8 years ago

29 Replies

zydelig

Curious question : I was not told at what times to take separate doses. The Specialty Pharmacy said 9-10 hours apart so I am doing 8am and 5pm. Did your doc or...

Curious question : I was not told at what times to take separate doses. The Spec...

greygirl

•8 years ago

20 Replies

Apps UK ?

I'm looking for a 'Symptoms record App' specifically tailored for UK users ? There are plenty out there but the ones I've found are tailored more towards US...

I'm looking for a 'Symptoms record App' specifically tailored for UK users ? Th...

Juliette02

•8 years ago

16 Replies

Reply to CLL CANADA

Hello, CLL Canada Haven't got the hang of this website yet. Anyway in reply . Trial is Resonate PCYC1112CA and you are quite right the capsules are 140 and...

Hello, CLL Canada Haven't got the hang of this website yet. Anyway in reply . Tr...

Mike1724

•8 years ago

1 Reply

Benefit in CLL of H pylori eradication?

Hello ! Does anyone have any knowledge of any connection between CLL and H pylori infection? I know there were clinical trials years ago which showed that...

Hello ! Does anyone have any knowledge of any connection between CLL and H pylor...

bendintheroad1

•8 years ago

2 Replies

Medicines to b avoided with Ibnutrib

Got following feedback on various medicine which shouldn't be taken with Ibnutrib: This website gives various interactions associated with ibrutinib. Alcohol...

Got following feedback on various medicine which shouldn't be taken with Ibnutri...

Anilbhard

•8 years ago

1 Reply

New member

Hello, I have been on Ibrutinib 3 tablets of 180mg every day for 3 years, on a trial ,having previously had 2 infusions of various drugs which didn't work....

Hello, I have been on Ibrutinib 3 tablets of 180mg every day for 3 years, on a t...

Mike1724

•8 years ago

11 Replies

Spots on face

Hi everybody, on second week of ibrutinib and getting red spots under the skin on my face. Any remedies out there, or is this to be expected?

Hi everybody, on second week of ibrutinib and getting red spots under the skin o...

Broadbent

•8 years ago

6 Replies

Side effects. Itchy skin

I have been on Ibrutinib for 3 years and most of that time my skin has been unbareably itchy . I was on two previous infusion trials which didn't work but this...

I have been on Ibrutinib for 3 years and most of that time my skin has been unba...

Mike1724

•8 years ago

Be the first to reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2017

Explainer: what are blood groups and why do they matter?

WOW

Would like CLL Specialist in BC - Private pay for IGHV?

High Altitude and CLL: Risk?

Advice needed

Switching from Ibrutinib to Venetoclax

Top 3 ? - Questions for first visit to CLL specialist.

Members conference

1st week on venetoclax - WOW, not what we expected...

Newly diagnosed, less than 6 mos

CLL Treatment - Give your body a rest?

Slight fever in the evening with Ibrutinib

Two New Challenges

Experiences with complementary therapies?

Hearing loss and CLL

Hell no...

Venetoclax and the liver

UTIs could soon be life-threatening without new antibiotics

Good luck all!

Chemotherapy vs Ibrutinib for CLL Frontline Treatment - Dr Susan O'Brien. 12 to 24% of FCR patients effectively cured 6 years after FCR

New to the group (not at all new to CLL!). Thought I'd say hello...

Secondary BR Treatment

zydelig

Apps UK ?

Reply to CLL CANADA

Benefit in CLL of H pylori eradication?

Medicines to b avoided with Ibnutrib

New member

Spots on face

Side effects. Itchy skin

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