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CLL Support

22,531 members • 38,702 posts

All posts for May 2018

which Chronic leukemia

is worse? none is worse, right? different, but the same in that sense, right? Also, anyone a good CML forum? last Dr wanted to treat CLL, he missed the CML....

is worse? none is worse, right? different, but the same in that sense, right? A...

tedrog

•6 years ago

12 Replies

Help with article link

Hey all, A few months Back someone posted an article about research focus on chronic and not cure. Does remember have that link? Thanks

Hey all, A few months Back someone posted an article about research focus on chr...

tedrog

•6 years ago

6 Replies

Anyone suffering with neuropathy ?

I need help from anyone who is also suffering with neuropathy, mine hands, legs, feet. Any suggestions most welcomed. Been to 4 different neurologists...

I need help from anyone who is also suffering with neuropathy, mine hands, legs,...

Njsailorgirl

•6 years ago

47 Replies

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CLLSA Conference Leeds 2018 - Videos of presentations now available

Video's of the presentations are now embedded into the conference summary. Whether you were there or not watching these positive presentations will be of...

Video's of the presentations are now embedded into the conference summary. Whe...

Myrddin

•6 years ago

1 Reply

CLL Live 2018 Videos Posted https://cllpag.ca/

Videos of the CLL Live 2018 speakers and panels are now posted on CLLPAG.ca https://cllpag.ca/ There are also links to the conference summary and program,...

Videos of the CLL Live 2018 speakers and panels are now posted on CLLPAG.ca http...

lankisterguy

Volunteer•6 years ago

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Absolute Lymphocytes:

I was told today that my absolute lymphocytes is 3 last week my WBC was 5000 I asked her to repeat expecting to hear 3000 300 but 3. Is this even possible....

I was told today that my absolute lymphocytes is 3 last week my WBC was 5000 I a...

Valour

•6 years ago

5 Replies

surprisingly shocked!

hello everyone. yesterday was my 6 month bloodwork and visit with my CLL specialist. i was rather dreading the appointment, as last time round, my lymphocytes...

hello everyone. yesterday was my 6 month bloodwork and visit with my CLL special...

ninap

•6 years ago

15 Replies

Hot flashes in CLL

Is it a symptom or disease progression?? It’s tolerable yet can only hope it stays cool out there as it gets magnified in Warner temperatures.

Is it a symptom or disease progression?? It’s tolerable yet can only hope it sta...

Mazendudar

•6 years ago

14 Replies

Yet another side effect after FCR

After the acute anaemia, disappearing neutrophils and infection in both eyes, I now have a rash all over me, except my face. It’s 3 weeks since first FCR. The...

After the acute anaemia, disappearing neutrophils and infection in both eyes, I ...

Mandy56

•6 years ago

24 Replies

What does this exactly mean?

What does this mean? It is on my record. I know what it means but I guess I really want to understand what they are really saying...(Lymphoid leukemia,...

What does this mean? It is on my record. I know what it means but I guess I real...

Mamawof25

•6 years ago

1 Reply

IMPORTANT Update on Developments in UK regarding Access to Ibrutinib for R/R patients in line with NICE.

*Note this is an unlocked post* There have been several developments since the last update. As of this morning, this is the current situation. *...

*Note this is an unlocked post* There have been several developments since the ...

Jm954

Administrator•6 years ago

4 Replies

Imbruvica

My husband has been on Imbruvica for 29 days and had appointment with Oncologist today. His WBC has gone from 28,000 to 90,000 today. His Oncologist was not...

My husband has been on Imbruvica for 29 days and had appointment with Oncologist...

Sis1Ap3

•6 years ago

16 Replies

CLL/PLL?

Hello, new here. I'm hoping to get some information regarding my father's latest bloodwork. He is now showing high prolymphs and low platelets. He's not seeing...

Hello, new here. I'm hoping to get some information regarding my father's latest...

stmdonofrio

•6 years ago

5 Replies

prolymphocytic

new report and lymphs are 81 and a new word for me 'prolymphocytic'. Googled and sounds scary. Anyone, help understanding this?

new report and lymphs are 81 and a new word for me 'prolymphocytic'. Googled an...

lindalou5

•6 years ago

7 Replies

CLL (W&W) Fatigue and Adderall

Hello, community. I've been on W&W for five years now. It looks like I'll be heading into treatment in August or September. Numbers are getting bad. For the...

Hello, community. I've been on W&W for five years now. It looks like I'll be hea...

Lily_Pad_Master

•6 years ago

40 Replies

NHS England are not follow NICE guidelines on other cancer drugs.

I know many are following the issue with NHS England not following NICE guidelines for the use of Ibrutinib, so people like myself cannot get the best...

I know many are following the issue with NHS England not following NICE guidelin...

Mick491

•6 years ago

3 Replies

The petition to stop NHS England refusing to dispense Ibrutinib to CLL patients

https://petition.parliament.uk/signatures/46419991/signed?token=gGJtTSbWgyIgF3RY6Olo

https://petition.parliament.uk/signatures/46419991/signed?token=gGJtTSbWgyIgF3RY...

hammyj

•6 years ago

1 Reply

The Bloodline with LLS ------------------------------------ A PODCAST FOR PATIENTS AND CAREGIVERS

http://www.lls.org/ ( a USA base organization but the links and audio programs etc. should work world wide- Len) Being diagnosed with a blood cancer...

http://www.lls.org/ ( a USA base organization but the links and audio programs...

lankisterguy

Volunteer•6 years ago

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Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)

We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this...

We appreciate your participation in Managing the Complications of Chronic Lympho...

lankisterguy

Volunteer•6 years ago

Be the first to reply

Was anyone else frightened to start Ivig treatments ?

I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving...

I like to consider myself a pretty tough chick but for some reason I’m scared to...

Luckyliss

•6 years ago

18 Replies

Ibrutinib my update

To keep you up to speed. I've just been to see my consultant and in the last 3 weeks there has been a case review and all the consultants agreed Ibrutinib was...

To keep you up to speed. I've just been to see my consultant and in the last 3 w...

Mick491

•6 years ago

25 Replies

Second Opinion Dr needed

Any one been to both Dr. Furman and Dr. Keating to give an honest opinion for second opinion route? Any guidance appreciated. TX or NY I know....but worth it...

Any one been to both Dr. Furman and Dr. Keating to give an honest opinion for se...

Lauriesue4

•6 years ago

20 Replies

Thankfully i have been in watchand wait since my august 2013 diagnosis aged 53but have thinning dry hair. Any ideas?

Anybody with this problem?

Dawnclark

•6 years ago

9 Replies

BR Expectations?

Hello! My CLL has finally progressed to the point where my doctor now wants to start BR for treatment. I've become extremely anemic and have needed...

Hello! My CLL has finally progressed to the point where my doctor now wants to ...

Jjcrepeau

•6 years ago

14 Replies

Getting better

I have been too slow in sharing good news. Last week I learned that my bone marrow biopsy done 28 days after getting my CAR-T cells showed no copies of the DNA...

I have been too slow in sharing good news. Last week I learned that my bone marr...

bkoffman

CLL CURE Hero•6 years ago

29 Replies

Not in the international press yet

But the Spanish press is full of it.... https://elpais.com/elpais/2018/05/21/ciencia/1526928134_152105.html Researchers in Barcelona have completed mapping the...

But the Spanish press is full of it.... https://elpais.com/elpais/2018/05/21/cie...

yoniboi

•6 years ago

8 Replies

Be positive

Evening everyone - as usual this place gives me a lift - so much help and support from everyone. I'm reminded that a year ago I was mid FCR (6 rounds) and...

Evening everyone - as usual this place gives me a lift - so much help and suppor...

MattGGibson

•6 years ago

16 Replies

Petition against NHS England and use of Ibrutinib

Dear all Following the Times revelation about NHS England going against NICE recommendations I have begun a petition to get them to follow those guidelines so...

Dear all Following the Times revelation about NHS England going against NICE re...

Mick491

•6 years ago

68 Replies

Latest figures

White blood over 230 Red blood 3 .7 Lymph’s in range

Jsk1950

•6 years ago

3 Replies

Alcohol

Hi guys can anyone tell me if they had a few beers when on the FCR Treatment programme after their 5 day tablets were finished. Hubby wants a beer in this nice...

Hi guys can anyone tell me if they had a few beers when on the FCR Treatment pro...

Sailormoon11

•6 years ago

14 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

which Chronic leukemia

Help with article link

Anyone suffering with neuropathy ?

CLLSA Conference Leeds 2018 - Videos of presentations now available

CLL Live 2018 Videos Posted https://cllpag.ca/

Absolute Lymphocytes:

surprisingly shocked!

Hot flashes in CLL

Yet another side effect after FCR

What does this exactly mean?

IMPORTANT Update on Developments in UK regarding Access to Ibrutinib for R/R patients in line with NICE.

Imbruvica

CLL/PLL?

prolymphocytic

CLL (W&W) Fatigue and Adderall

NHS England are not follow NICE guidelines on other cancer drugs.

The petition to stop NHS England refusing to dispense Ibrutinib to CLL patients

The Bloodline with LLS ------------------------------------ A PODCAST FOR PATIENTS AND CAREGIVERS

Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)

Was anyone else frightened to start Ivig treatments ?

Ibrutinib my update

Second Opinion Dr needed

Thankfully i have been in watchand wait since my august 2013 diagnosis aged 53but have thinning dry hair. Any ideas?

BR Expectations?

Getting better

Not in the international press yet

Be positive

Petition against NHS England and use of Ibrutinib

Latest figures

Alcohol

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