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CLL Support

22,532 members • 38,709 posts

All posts for May 2018

Tired

Good Morning All; The worst thing about this monkey we are carrying around on our shoulders is being tired all the time. I feel the best in the mornings...

Good Morning All; The worst thing about this monkey we are carrying around on...

BlueGillfisherman

•6 years ago

82 Replies

Flying on a plane after starting Ibrutinib

We have plans to meet our kids in Israel at the end of June. If my husband starts Ibrutinib soon, are there any travel restrictions? Has anyone out there been...

We have plans to meet our kids in Israel at the end of June. If my husband start...

Livingwithcll

•6 years ago

41 Replies

Side Effects of Ibrutinib/Venetoclax

Started Ibrutinib 9 months ago and Ventetoclax 6months ago on the Ibrutinib/Venetoclax Trial. I guess I am lucky as diarrhea only kicked in 4 months ago while...

Started Ibrutinib 9 months ago and Ventetoclax 6months ago on the Ibrutinib/Vene...

jonrha

•6 years ago

10 Replies

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Canada- ‘It is discrimination': Sick worker wins groundbreaking case against WSIB

http://www.cbc.ca/news/canada/sick-worker-groundbreaking-case-wsib-benzene-1.4649680 Landmark ruling could set a precedent for people exposed to the same...

http://www.cbc.ca/news/canada/sick-worker-groundbreaking-case-wsib-benzene-1.46...

Juliette02

•6 years ago

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Allergies

Dear all, I was diagnosed with CLL in January 2018. It was quite shocking as no one in my immediate family is known to have cancer(s). Autoimmune issues are...

Dear all, I was diagnosed with CLL in January 2018. It was quite shocking as n...

MP2018

•6 years ago

11 Replies

Paper about immune deficiency in CLL

This is a good read. And if you have a doctor or friend who says early cll isn’t associated with immune problems, could be a useful paper to show them....

This is a good read. And if you have a doctor or friend who says early cll isn’t...

AdrianUK

•6 years ago

28 Replies

Anyone had FCR as second line treatment?

Hi all has any one had FCR for second line treatment if so how were your results. I'm going back on treatment after 22nd May and discussing what's best.

Hi all has any one had FCR for second line treatment if so how were your results...

Mick491

•6 years ago

18 Replies

No Question-Good News

I had my 4 month check up with my hematologist today. Lab reports are good!! WBC 15 all the rest were normal.Now my appointments are every 6 months with my...

I had my 4 month check up with my hematologist today. Lab reports are good!! WBC...

Dawn-Marie

•6 years ago

7 Replies

Treatmant for cll

Hello!My husband has cll from 2012.he is unmutated del 11q.His wbc is 140000 and the platelets 100000.Our dr said that is time for therapy.He said FCR.Anyone...

Hello!My husband has cll from 2012.he is unmutated del 11q.His wbc is 140000 and...

nikolle

•6 years ago

20 Replies

More treatment confusion?!

Hi CLL'ers, I am very grateful for this forum. I'm on line a lot but this is the only place I go for CLL info. I saw my Dr. about a week ago and we have the...

Hi CLL'ers, I am very grateful for this forum. I'm on line a lot but this is the...

lorna222

•6 years ago

16 Replies

NEVER GIVE UP!

I’m a 71 year old female of Irish decent. I was diagnosed with CLL in 1991. It remained in remission until January 2017. My oncologist started me on...

I’m a 71 year old female of Irish decent. I was diagnosed with CLL in 1991. It...

maowen46

•6 years ago

17 Replies

An exercise pill would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment

Today, Australia’s peak body representing health professionals who treat people with cancer, has joined 25 other cancer organisations to call for exercise...

Today, Australia’s peak body representing health professionals who treat people ...

AussieNeil

Founder Admin•6 years ago

35 Replies

CLL Ireland's patient information day .

We had our information day for patients and their families yesterday in Dublin and we received fantastic feed back. It was wonderful to meet so many patients...

We had our information day for patients and their families yesterday in Dublin a...

Irishcll

•6 years ago

11 Replies

Questions for consultant?

49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue. Started FCR...

49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily ris...

AntonMB

•6 years ago

34 Replies

How do I manage without spousal support?

Hi all was enjoying Cinco De Mayo with my cousin and a friend and hubby was the driver and of course he was sweet as pie...The minute we got home he started in...

Hi all was enjoying Cinco De Mayo with my cousin and a friend and hubby was the ...

Ladydi49

•6 years ago

60 Replies

Day6

Finished the F.C. medication last night and, as expected, feel totally drained today. Just walked down the garden to feed the hens , with my mask in place to...

Finished the F.C. medication last night and, as expected, feel totally drained t...

Mandy56

•6 years ago

27 Replies

Soreness on ibrutinib

I've been on ibrutinib for 28 months and a recent exam showed no detectable CLL cells after blood examination by microscope. I have had few side effects but...

I've been on ibrutinib for 28 months and a recent exam showed no detectable CLL ...

Trilpub

•6 years ago

9 Replies

Quinine use for leg cramping?

In another forum a patient questioned whether the policy against quinine use for leg cramping had changed from when she was seen at NIH (National Institutes of...

In another forum a patient questioned whether the policy against quinine use for...

ThreeWs

•6 years ago

7 Replies

Feeling Good

I was disagnosed with CLL six years ago. Was in remission for 3 years and then had to have 2 3day chemo sessions to get my WBS count back inline. Now 3 years...

I was disagnosed with CLL six years ago. Was in remission for 3 years and then h...

Audrey10

•6 years ago

8 Replies

24 Month results post Randomisation— Phase 2 Flair trial

Hi Everyone, Not posted for a while. But thought a few of you of you taking Imbruvica & Retuximab May find it interesting Neutrophil count 1.8 — 3.0...

Hi Everyone, Not posted for a while. But thought a few of you of you taking Imb...

Carpenters52

•6 years ago

6 Replies

Bronchitis sinusitis... comes with the territory?

Last year, before being diagnosed with W&W CLL, I got bronchial and sinus congestion that trailed on for a couple of months... This year, dealing with same,...

Last year, before being diagnosed with W&W CLL, I got bronchial and sinus conges...

Butitisme

•6 years ago

19 Replies

Dad has to start CLL treatment

My dad was diagnosed with CLL almost 2 years ago. He got CLL from aiding in the cleanup of Ground Zero after 9/11. Since his diagnosis, his blood count...

My dad was diagnosed with CLL almost 2 years ago. He got CLL from aiding in the ...

Hidden

•6 years ago

24 Replies

Transplant in sight

It's been a while since I last posted but I finally feel that the transplant is in reach. Ibruitinib and Venetoclax combination is having an amazing impact...

It's been a while since I last posted but I finally feel that the transplant is ...

KAS8

•6 years ago

14 Replies

CT Scan

Today I had a CT Scan and blood work. My numbers are not great almost as bad as when diagnosed in 2009. I have appt with oncologist on the 10th to go over...

Today I had a CT Scan and blood work. My numbers are not great almost as bad as ...

MartiP2009

•6 years ago

4 Replies

ATM

Hi. I had an appointment today with my haematologist and was told that I have ATM deletion. Does anyone have any information on this? The proposed treatment...

Hi. I had an appointment today with my haematologist and was told that I have A...

jaypax

•6 years ago

7 Replies

What does CLL stand for?????

I was harmed by the antibiotic Levaquin and somehow came across the CLL page. I was curious what CLL is so I looked to see but unfortunately there is nothing...

I was harmed by the antibiotic Levaquin and somehow came across the CLL page. I ...

mgirard

•6 years ago

19 Replies

MBL/CLL/SLL = argh!

Anyone else had issues with this sort of vague diagnosis? Mercifully, I'm seeing a new consultant tomorrow as the previous one has retired/driven me nuts. On...

Anyone else had issues with this sort of vague diagnosis? Mercifully, I'm seein...

Hidden

•6 years ago

8 Replies

Need Clarification regarding Splenic Marginal Zone Lymphoma

I am from India and I was informed by the doctors that my mother, who is 61 years, has a rare disease called Splenic Marginal Zone Lymphoma. The percentage of...

I am from India and I was informed by the doctors that my mother, who is 61 year...

sellakumar

•6 years ago

3 Replies

Second day of first FCR

So second dose of FCR with the long dose of Rituximab. Got a bit hot and tired at the end, but no nausea or other nastiness and felt fine since. Even managed a...

So second dose of FCR with the long dose of Rituximab. Got a bit hot and tired a...

Mandy56

•6 years ago

15 Replies

Platelet count varying

Hello, I recently got admitted to the hospital for fever, and I had 143 of platelet count and in the next day report I had 57, the very next day I had again...

Hello, I recently got admitted to the hospital for fever, and I had 143 of plate...

Marinepp

•6 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2018

Tired

Flying on a plane after starting Ibrutinib

Side Effects of Ibrutinib/Venetoclax

Canada- ‘It is discrimination': Sick worker wins groundbreaking case against WSIB

Allergies

Paper about immune deficiency in CLL

Anyone had FCR as second line treatment?

No Question-Good News

Treatmant for cll

More treatment confusion?!

NEVER GIVE UP!

An exercise pill would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment

CLL Ireland's patient information day .

Questions for consultant?

How do I manage without spousal support?

Day6

Soreness on ibrutinib

Quinine use for leg cramping?

Feeling Good

24 Month results post Randomisation— Phase 2 Flair trial

Bronchitis sinusitis... comes with the territory?

Dad has to start CLL treatment

Transplant in sight

CT Scan

ATM

What does CLL stand for?????

MBL/CLL/SLL = argh!

Need Clarification regarding Splenic Marginal Zone Lymphoma

Second day of first FCR

Platelet count varying

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