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CLL Support

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All posts for March 2019

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Is there help for higher income individuals on Ibrutinib?

Glasstop

•5 years ago

14 Replies

Very painful node beneath my ear came up v. suddenly

Hi all, I haven't posted for some time. Haven't been that well. Disappointing given I was told my disease was stable. Has anyone had a very painful node, maybe...

Hi all, I haven't posted for some time. Haven't been that well. Disappointing gi...

Steffi50

•5 years ago

5 Replies

Ighv mutated

I found out last week that I am IGHV mutated. (Apparently that’s a good thing) It means I respond really well to the chemo. I was also told by my specialist...

I found out last week that I am IGHV mutated. (Apparently that’s a good thing) I...

Puckie

•5 years ago

2 Replies

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Low platelets otherwise normal CBC with diff

Hi all, I was diagnosed in 2016. My cbc with diff was wnl except a plt count of 29k. Initially diagnosed with ITP then a bone marrow that year showed CLL...

Hi all, I was diagnosed in 2016. My cbc with diff was wnl except a plt count of...

Bchittineni

•5 years ago

4 Replies

Venetoclax and Low Platelets

My husband was on Ibrutinib for 4 years and recently discontinued it as his disease began to progress. He is now on the ramp up phase of Venetoclax. Prior to...

My husband was on Ibrutinib for 4 years and recently discontinued it as his dise...

KLWC

•5 years ago

8 Replies

Muscle cramps on Imbruvica

I have been on Imbruvica for 23 weeks and have periodically had muscle cramps. Lately the cramps have been more frequent and in more numerous places. I spoke...

I have been on Imbruvica for 23 weeks and have periodically had muscle cramps. L...

rome3215

•5 years ago

19 Replies

Cough drops did the trick

I have to post, especially to papatom, regarding a solution to persistent mouth sores related to taking Imbruvica. Papatom responded to my recent post that...

I have to post, especially to papatom, regarding a solution to persistent mouth ...

Survivor1951

•5 years ago

7 Replies

Lymphocytosis??? Worry about my little girl

Suspected Pathology Leuko: lymphocytosis, neutropenia

Princesa0130

•5 years ago

4 Replies

Since being on Imbruvica 425....WBC has climbed to greater number....

NEWBIE....Hello to all. Diagnosed with CLL in 2010. Started treatment (IMBRUVICA 425) in December of 2018. My recent CT scan shows that my lymphs have...

NEWBIE....Hello to all. Diagnosed with CLL in 2010. Started treatment (IMBRUVI...

KandiKandi

•5 years ago

11 Replies

chronic leukemia issues

I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right...

I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (l...

dannydann

•5 years ago

4 Replies

Yousef

See this

Yousef320

•5 years ago

1 Reply

Yousef

I have 18000 wbc....netrphil 18 lymphosyt 70 Is that a case of CLL?

Yousef320

•5 years ago

1 Reply

Afib on Ibrutinib

Started Ibrutinib 420 In November was stopped after 11 days because of side effects. After a weed started on 140 dose then increased to 280 after a month. WBC...

Started Ibrutinib 420 In November was stopped after 11 days because of side effe...

Porter01

•5 years ago

3 Replies

News/day 3

Well officially 1/2 way done... Saw the transplant dr and found out that because the chemo didn’t work in the trial, I can no longer donate stem cells to...

Well officially 1/2 way done... Saw the transplant dr and found out that because...

rlyndecker

•5 years ago

7 Replies

7 month on Ibrutinib

Had my Mayo appt yesterday Lymphocytes count is now 12!!! Hemoglobin 13.1 and platelets 195. Low dose of Ibrutinib 140 mg! I have gained weight (which I'm...

Had my Mayo appt yesterday Lymphocytes count is now 12!!! Hemoglobin 13.1 and pl...

aremmick

•5 years ago

34 Replies

Excessive Nasal Congrstion

It’s a constant with me as well. I have found that a steroid nasal spray Fluticasone helps open me up and another drying spray has helped tremendously. I too...

It’s a constant with me as well. I have found that a steroid nasal spray Flutica...

Gstrawhealth

•5 years ago

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Needing to start on meds now and can't afford the copays

Saw Oncologist yesterday. My CBC is in a very fragile state. My night sweats are bad again and I am so fatigued. He wants me to go on Ibrunitib he has...

Saw Oncologist yesterday. My CBC is in a very fragile state. My night sweats a...

BamaLady

•5 years ago

54 Replies

How long does ibutrinib still working for 17p patient?

How long does ibutrinib still working for a 11q and 17p young patient? My brother started in july 2018 his monoteraphy treatment for a relaspsed cll with...

How long does ibutrinib still working for a 11q and 17p young patient? My brothe...

Cgr2018

•5 years ago

9 Replies

Day 2 of hospital

Well I had an appetite today for the first time in 12 days! Food sucks but edible. I think I ate too much even though I still didn’t eat much... For some...

Well I had an appetite today for the first time in 12 days! Food sucks but edib...

rlyndecker

•5 years ago

7 Replies

FATIGUE SICKNESS AFTER AIR TRAVEL/CLL

Hi there. I just went to San Francisco for a week to visit and meet my first grandchild. I kept up with all the coming and going and did really well as far as...

Hi there. I just went to San Francisco for a week to visit and meet my first gra...

Bsv39

•5 years ago

5 Replies

CLL with Parkinson's disease

Dear community I was diagnosed June 2018 with CLL. I was put on Watch and Wait, until now as my Consultant has decided to start me on ibrutinib. As I am 81...

Dear community I was diagnosed June 2018 with CLL. I was put on Watch and Wait,...

lena10tayl

•5 years ago

7 Replies

How long did this side effect last?

I would like to hear from anyone who developed tongue sores after going on Imbruvica. I began taking it Dec. 19 of last year. After initial joint pains...

I would like to hear from anyone who developed tongue sores after going on Imbru...

Hidden

•5 years ago

16 Replies

New member with CLL

Just reading a lot of comments on here and find it very informative, I've been diagnosed nearly 7 years ago but on my last visit to the specialist at the...

Just reading a lot of comments on here and find it very informative, I've been d...

Turbomotive604

•5 years ago

16 Replies

CLLSA Cambridge Members Conference Mar 2019

The first talk of the day was a team presentation from the Psycho-Oncology Service, Liaison Psychiatry, Addenbrooke’s Hospital - Approaches to Psychological...

The first talk of the day was a team presentation from the Psycho-Oncology Servi...

Myrddin

•5 years ago

5 Replies

CLL congestion

Does anyone else with CLL have constant mucous/congestion. It is the middle of the winter so unlikely allergies plus the congestion has been there since I was...

Does anyone else with CLL have constant mucous/congestion. It is the middle of t...

Bryanb

•5 years ago

38 Replies

Treatment ”options”

Hello all you wonderful people! I'm looking for hope and positive energy here... My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain...

Hello all you wonderful people! I'm looking for hope and positive energy here.....

LurkerEmma

•5 years ago

3 Replies

Been told tiredness isn’t a symptom of cll

Hi I just joined this wonderful Website, I have cll I’m on watch and wait nearly 2 years now my question is I got diagnosed because I was and still am tried...

Hi I just joined this wonderful Website, I have cll I’m on watch and wait nearly...

Noelr71

•5 years ago

29 Replies

My friend will be doing a stem cell treatment for her cll. She will be at the Mayo Clinic. She has 17P that has cloned. What is the success

She has been through imbutran now on ventalox platelets are at 65 so the ventalox is failing. She has been on the medication for approximately 2 years. Had...

She has been through imbutran now on ventalox platelets are at 65 so the ventalo...

Dawn-Marie

•5 years ago

10 Replies

Day 1 hospital

Of 5, finally got admitted about 5 hours ago after quite a scare (my transportation no longer can see today!) Luckily, it was an early release at school so a...

Of 5, finally got admitted about 5 hours ago after quite a scare (my transportat...

rlyndecker

•5 years ago

12 Replies

Shingles vaccine side effects?

I had the first of 2 shots for shingles on Wednesday. Shringrex I believe. I asked what the side effects would be and all she said is “you’ll feel like crap...

I had the first of 2 shots for shingles on Wednesday. Shringrex I believe. I ask...

t2aa

•5 years ago

34 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2019

*I am new here

Very painful node beneath my ear came up v. suddenly

Ighv mutated

Low platelets otherwise normal CBC with diff

Venetoclax and Low Platelets

Muscle cramps on Imbruvica

Cough drops did the trick

Lymphocytosis??? Worry about my little girl

Since being on Imbruvica 425....WBC has climbed to greater number....

chronic leukemia issues

Yousef

Yousef

Afib on Ibrutinib

News/day 3

7 month on Ibrutinib

Excessive Nasal Congrstion

Needing to start on meds now and can't afford the copays

How long does ibutrinib still working for 17p patient?

Day 2 of hospital

FATIGUE SICKNESS AFTER AIR TRAVEL/CLL

CLL with Parkinson's disease

How long did this side effect last?

New member with CLL

CLLSA Cambridge Members Conference Mar 2019

CLL congestion

Treatment ”options”

Been told tiredness isn’t a symptom of cll

My friend will be doing a stem cell treatment for her cll. She will be at the Mayo Clinic. She has 17P that has cloned. What is the success

Day 1 hospital

Shingles vaccine side effects?

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