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CLL Support

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All posts for September 2016

About to start FCR

I'm about to start FCR after almost 5 years of watch and wait. Anyone been through it? Any advice?

I'm about to start FCR after almost 5 years of watch and wait. Anyone been throu...

Kenn123

•8 years ago

24 Replies

Warning: Subject is gross

I've seen posts about bloody noses on another CLL forum I'm a member of, but could not find it here. I typically have these in the spring. I've read that it...

I've seen posts about bloody noses on another CLL forum I'm a member of, but cou...

Carrot_Top

•8 years ago

16 Replies

Spreadsheets

Sorry, I think I am being stupid. I know that I have seen on this wonderful site somewhere a link to a spreadsheet for keeping track of results. I have calmed...

Sorry, I think I am being stupid. I know that I have seen on this wonderful site...

Thinkimjob

•8 years ago

6 Replies

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What happens when we fail ibrutinib

Hi, Last week in the Conference Coverage section, we’ve posted another interview with Dr. Susan O’Brien out of UCI where we discussed an important paper from...

Hi, Last week in the Conference Coverage section, we’ve posted another interview...

bkoffman

CLL CURE Hero•8 years ago

5 Replies

Shingles with CLL

Hi all Has anyone had shingles post FCR. Ive had it for a week now and just finished a course of Aciclivor 800mgs 5 x a day. Spread of the rash is continuing...

Hi all Has anyone had shingles post FCR. Ive had it for a week now and just fini...

Mick491

•8 years ago

27 Replies

I received a reminder to introduce myself

I have been replying to posts but gave no bio so here goes. I am 64 and live in Canada. I am a wife mother and grandmother. I own my own business and...

I have been replying to posts but gave no bio so here goes. I am 64 and live in...

ap64

•8 years ago

13 Replies

New to CLL in Canada

I have been diagnosed with CLL in April 2016. At this time it is WAIT & WATCH. My lymphocytes blood count is around 200 with an enlarged spleen, enlarged...

I have been diagnosed with CLL in April 2016. At this time it is WAIT & WATCH. ...

Champlain

•8 years ago

12 Replies

One Month On

Diagnosed one month ago and sill trying to come to grips with the implications. I'm 58 and on W & W (and worry). Had flow cytometry done which showed cd-38...

Diagnosed one month ago and sill trying to come to grips with the implications. ...

Ned1

•8 years ago

9 Replies

I'm new here

Good morning all, (it is 4:15 AM here in the Ozarks) I was diagnosed with CLL sometime in the Fall of 2012, and the reason I even started testing was the...

Good morning all, (it is 4:15 AM here in the Ozarks) I was diagnosed with CLL s...

ozarkharper

•8 years ago

4 Replies

Why we should use numbers (#) not percentages (%) for white cells - Dr Susan Leclair

One of the problems of having an orphan disease like CLL, is that while standard processes in the medical system work well for the majority of patients,...

One of the problems of having an orphan disease like CLL, is that while standard...

AussieNeil

Administrator•8 years ago

2 Replies

cll worst day of my life

9 years later and still early stage cll

veramac50

•8 years ago

15 Replies

Anaemia

Hi Everyone, I had my 4 monthly check up last Thursday and was told I was slightly anaemic, I have just received a letter from my haemotologist confirming...

Hi Everyone, I had my 4 monthly check up last Thursday and was told I was slig...

june65

•8 years ago

13 Replies

My TRIP TO NIH for Natural History of CLL Trial

It was a three hour drive from Home to Bethesda MD. Appears I am progressing slowly, and after yesterday's appointment, my next appointment is Sept 14 2017...

It was a three hour drive from Home to Bethesda MD. Appears I am progressing sl...

tekusa

•8 years ago

36 Replies

What to expect.

Hi I'm new to all of this. I am due to start Bendamustine & Rituximab Treatment in the next two to three weeks. Wondered if anyone could let know what I'm in...

Hi I'm new to all of this. I am due to start Bendamustine & Rituximab Treatmen...

Jacksc06

•8 years ago

17 Replies

Hello everyone

Diagnosis with CLL in 2013 Just learned yesterday I was 6.2 on my AC1 test. Not to good. But won't let it get me down. Just time to get busy on lowering it.

Diagnosis with CLL in 2013 Just learned yesterday I was 6.2 on my AC1 test. Not ...

Cham2355

•8 years ago

4 Replies

World Lymphoma Awareness Day

Today is World Lymphoma Awareness Day: Every 3 minutes someone is diagnosed with a Blood Cancer in the USA.

Today is World Lymphoma Awareness Day: Every 3 minutes someone is diagnosed with...

bkoffman

CLL CURE Hero•8 years ago

2 Replies

Cycle 4, Week 1 Update from OSU Trial

I flew in yesterday for this week’s treatment. As usual, I planned a little adventure and walked back to Grandview Avenue for dinner and then sat in a called...

I flew in yesterday for this week’s treatment. As usual, I planned a little adve...

thompsonellen

•8 years ago

16 Replies

Fingers crossed

Since posting last I have been back to the Churchill , cat scan was normal , nothing to report there , specialist was very laid back , doesn't want to see me...

Since posting last I have been back to the Churchill , cat scan was normal , not...

Nigel-Q

•8 years ago

3 Replies

Mutational signatures of ionizing radiation in second malignancies

While we don't yet know of any definitive causes of CLL, CLL does put us at a higher risk of secondary cancers, due to CLL reducing our immune system's...

While we don't yet know of any definitive causes of CLL, CLL does put us at a hi...

AussieNeil

Administrator•8 years ago

2 Replies

FCR vs imbruvica first line

I was wondering what people's opinion was for FCR vs imbruvica first line for moderate risk (unmutated, +Zap70, normal FISH for me) patients. With my...

I was wondering what people's opinion was for FCR vs imbruvica first line f...

nkferg

•8 years ago

28 Replies

Low blood platelets

I have blood platelets count only 1.29 lakh.Is there any problem?Any health measure should have to follow?

I have blood platelets count only 1.29 lakh.Is there any problem?Any health meas...

sandeep-1998

•8 years ago

3 Replies

Health Check: can vitamins supplement a poor diet?

Tim Crowe, Associate Professor in Nutrition, Deakin University states that 'For a healthy adult, if supplements are used, these should normally be taken at...

Tim Crowe, Associate Professor in Nutrition, Deakin University states that 'For ...

AussieNeil

Administrator•8 years ago

1 Reply

Is the five-second rule real?

Do you follow the five second rule for dropped food? If so, this research, which uses a test bacteria with similar attachment characteristics to salmonella...

Do you follow the five second rule for dropped food? If so, this research, whic...

AussieNeil

Administrator•8 years ago

5 Replies

CLL and Cavernoma

Anyone know of a possible link between Chronic Lymphocytic Leukaemia Stage A and Cavernoma? Haematologist says certainly not. Many thanks Ottie

Anyone know of a possible link between Chronic Lymphocytic Leukaemia Stage A and...

otonal

•8 years ago

1 Reply

proactive patients = better prognosis

Yesterday, 9/11/2016 had for me an additional and momentous memory beyond the horror of the tragic attack on our country perpetrated largely by Saudi Arabian...

Yesterday, 9/11/2016 had for me an additional and momentous memory beyond the ho...

ThreeWs

•8 years ago

3 Replies

Ibrutinib / Imbruvica?

Hi all, I'm a CLL and ITP patient and have had many different treatments in the past number of years. Following a recent CT scan and an increase in the size...

Hi all, I'm a CLL and ITP patient and have had many different treatments in the...

Jimimajimbob

•8 years ago

22 Replies

steroid treatment

I have developed lesions in brain and spine. CLL team are not certain whether or not these are linked to my CLL. Decision has been made to start treatment of...

I have developed lesions in brain and spine. CLL team are not certain whether o...

perfecteverytime

•8 years ago

5 Replies

Vaccines

I'm getting ready to get all my vaccines up to date, I will need most all of them. I'm curious if its Ok to get most at one time like they do with infants or...

I'm getting ready to get all my vaccines up to date, I will need most all of the...

garrick66

•8 years ago

10 Replies

One in five tattoo inks in Australia contain carcinogenic chemicals

'A report this week from the Australian government’s National Industrial Chemical’s Notification and Assessment Scheme (NICNAS) shows what’s in the ink...

'A report this week from the Australian government’s National Industrial Chemica...

AussieNeil

Administrator•8 years ago

3 Replies

Wait and watch

I want to thank all who wrote back to me about there experience with CLL. As of now I am healthy as a horse, with the exception of my white blood count and my...

I want to thank all who wrote back to me about there experience with CLL. As of...

Teddy405

•8 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2016

About to start FCR

Warning: Subject is gross

Spreadsheets

What happens when we fail ibrutinib

Shingles with CLL

I received a reminder to introduce myself

New to CLL in Canada

One Month On

I'm new here

Why we should use numbers (#) not percentages (%) for white cells - Dr Susan Leclair

cll worst day of my life

Anaemia

My TRIP TO NIH for Natural History of CLL Trial

What to expect.

Hello everyone

World Lymphoma Awareness Day

Cycle 4, Week 1 Update from OSU Trial

Fingers crossed

Mutational signatures of ionizing radiation in second malignancies

FCR vs imbruvica first line

Low blood platelets

Health Check: can vitamins supplement a poor diet?

Is the five-second rule real?

CLL and Cavernoma

proactive patients = better prognosis

Ibrutinib / Imbruvica?

steroid treatment

Vaccines

One in five tattoo inks in Australia contain carcinogenic chemicals

Wait and watch

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